Camouflaging or masking in autism has far reaching effects on the person. In this post you’ll discover what masking is, what effects it has on the person, why it is damaging and how to avoid it in future children.
What is masking in autism?
Masking is when an autistic person behaves in a way that is unnatural to them in an effort to seem more ‘neurotypical’.
Why would someone mask autism?
There are some simple reasons that people would mask their autism. In general, people fear things that are different. While some celebrate difference and diversity, many are unkind to those they don’t understand. It is only natural to try and hide your true self when you’ve been punished or bullied. Many autistics describe masking to fit in. However, this behaviour doesn’t stop in childhood.
There are 4 times more autistic males than females. Recently, there has been a lot of discussion if autism is really more common in males or if females are more skilled at (and more likely to) mask their symptoms. Female autistics are often diagnosed at later ages, potentially because they’ve been masking their autism symptoms. Many female autistics report only discovering their diagnoses when their own children were struggling. These women simply believed that they were different and needed to pretend to be ‘normal’.
Autistics who mask have said that it has helped them get friends and jobs. Unfortunately, masking autism has many negative downsides.
Outcomes of masking
While having friends and getting jobs might seems like excellent reasons to mask autistic symptoms there are many downsides. Autistics who mask report higher incidences of depression and anxiety. They internalize that who they are inherently isn’t good enough. That’s a horrible feeling to have. It can lead to all sorts of other problems. Some autistics relate regressions or loss of skills to masking.
Another really damaging downside of masking autism is that it leads to late diagnosis. Children aren’t receiving the help they need early on because they’re pretending to be someone they’re not. Not accessing early intervention services will have lasting impacts on the person.
Acceptance of neurodiversity: a path forward
There has been a recent explosion of awareness of autism in North America. Most people know at least one autistic person. However, this isn’t enough to inhibit people from masking. Awareness isn’t nearly enough. We have to embrace neurodiversity and create acceptance and equity in the same way we do for other differences.
Some behaviours have to be targeted (because they’re dangerous). However, most ‘typical’ autistic behaviours don’t need to be addressed. If we created a world that was accepting of difference, it wouldn’t matter that the person didn’t look at your eyes for extended periods of time, or talk about the topics that interest you. We would recognize and celebrate the intrinsic value that each person brings to our lives.
There is a lot of hype around early intervention in autism treatment. However, this hype can be very confusing. This deep dive into early intervention will help you understand the goal, how and where to access it, why it’s important and more.
What is early intervention in autism treatment?
Intervention or therapy that happens before a child enters school. Parents and caregivers work with therapists to learn skills and strategies that will help their child. Services can take many forms (in home, in daycare, in clinic). Early intervention can be delivered by a number of different professionals (speech therapists, occupational therapists, behaviour analysts, early childhood educators).
What are the different kinds of early intervention in autism treatment?
There are a number of different approaches to take that will be helpful for an autistic child – or a child who is showing red flags for autism. The approach that you take will depend on the professional that you work with. Some of the options are: a Board Certified Behaviour Analyst, a Speech-Language Pathologist, an Occupational Therapist, and an Early Childhood Educator.
If you choose a Board Certified Behaviour Analyst or Speech-Language Pathologist, you’ll potentially be using the Early Start Denver Model (ESDM). This model blends naturalistic teaching with behavioural concepts. It is a play based model that shares control between the child and the therapist. ESDM is very flexible in where it’s delivered. Some examples of therapy settings are: the child’s home, their daycare or a clinic. The Early Start Denver Model is based on a curriculum checklist that tracks a child’s skills based on typical development. From this, the therapist makes decisions about what skills should be the target of therapy.
If you live in Ontario, your child may be eligible for provincially funded Early Intervention. You can self-refer or have a professional you’re working with make the referral for you. However, the program names vary by region, so make sure you’re accessing everything that’s available.
What can we expect from early intervention?
Whenever you begin a new intervention it’s important to set goals. Likewise, when you begin an early intervention in autism treatment program you should determine what outcomes are realistic and possible for your child. As previously discussed, there is no cure for autism. The goal of early intervention should be to change the developmental trajectory of the child. If the child does not receive any intervention their developmental trajectory won’t change. With some intervention, the child’s development will more closely align with typically developing peers.
Your goal should be for the child to learn as many skills as possible. Communication, self-help/independence and play skills are all critical for very early learners. These domains should be the focus of intervention.
Does your child need to have a diagnosis to begin early intervention?
Beginning early intervention with your child as soon as you notice red flags is key. There is a lot to be learned for both the child and the caregivers. Waitlists for assessment and then treatment can be long. If you have an opportunity to begin therapy take it!
Each child has potential. Having early intervention for autism will only benefit your child. Reach out to us if you’d like to discuss your child’s early intervention program.
On Friday December 11th, 2020, the province published an announcement about the rollout of the newest variation of the Ontario Autism Program. The news came from Jennifer Morris, Assistant Deputy Minister, Ministry of Children, Community and Social Services. It was not the news we wanted.
The five pillars of the new(est) OAP are: core clinical services (therapy), foundational family services, early intervention, urgent mental health supports and service navigation. Arguably the most important and more valued pillar is the core clinical services. Sadly, this is also the most costly and will be delivered last.
The OAP announcement describes the upcoming ‘calls for applications’ from service providers who wish to bid to implement different pillars of the program. There was no mention of the core clinical services. It is incredibly frustrating and irresponsible for the provincial government to be focusing on these other elements of the OAP while ignoring clinical services. It is possible to implement multiple pillars at the same time.
The Conservatives decimated the program in 2018. They promised to have it fixed by April 2020. Then they said they needed another year. Now it seems as though it will be well into 2022 before we see any core clinical service funding. What do families do when their child’s one time interim funding over?
Some will argue that there is a pandemic and we cannot expect the government to focus on our issues exclusively. But I would argue that this is a problem that the government was ignoring for A LONG TIME before the pandemic began. Now is the time to support these families.
At least we should be clear on how it will be implemented and when. That’s what people expected in an Ontario Autism Program Announcement.
What’s happening now for families and providers
Because families are floating between 3 programs there is a lot of confusion. Legacy kids (mostly) get funding for the services they require – if they can find providers with clinicians available to do therapy. Childhood budget kids are using their funding and waiting for invitations to the interim one time funding. Interim one time funding families are worrying about what happens when their funding ends.
It is unconscionable that the Ford government is keeping families in the dark. ABA system capacity suffers the longer we are in limbo and chaos. Clinicians are leaving the field, for more consistent, stable work. Service providers are not able to meet the demand and waitlists continue to grow longer and longer.
How much longer will the autism community have to wait?
Each child develops at their own pace. However, there are general guidelines, called milestones, that are used in monitoring if your child is progressing. When a child doesn’t meet their milestones, it can be a red flag for autism. Red flags don’t necessarily mean your child will be diagnosed, but they are considered when determining if further assessment is needed.
Red flags for autism are divided into 3 categories. These categories align with the 3 diagnostic domains for autism: language, social skills and repetitive and stereotypic behaviours.
8 Red Flags for Autism
No words by 18 months or no two-word combinations by 24 months
Most children will have 10 words by the time they’re 18 months old. These words might not be complete but will be easy to understand and consistent. By 24 months many children are using two-word combinations. These combinations are often a name + item to make a request (e.g.: “Julia Milk”, “Daddy bed” etc.)
No pointing or use of gestures
Pointing is a very important skill. It allows a child to share their thoughts and interests in a non-verbal way. Most children point with their whole hand at first (reaching) but will eventually begin to extend their index finger to point. Likewise, gestures allow us to understand a child’s meaning without spoken language.
Inconsistent responding to name
By about a year old, your child should be consistently looking when you call their name. Responding to their name demonstrates that the child is able to divide their attention from what they’re doing when they hear a specific auditory cue.
Loss of previously mastered language skills
One of the biggest red flags for autism is a regression in language skills. Regression is when a child has mastered a skill but is then unable to demonstrate the same skill. Many parents of children with autism describe their child’s language development as typical until around 2 years of age, when the child lost the words, comprehension, pointing and gestures they were using.
Inconsistent eye contact
Many children with autism do not make eye contact naturally. In fact, adults with autism have said that eye contact can be painful or anxiety provoking. This goes beyond shyness.
Lack of joint attention
One of the red flags for autism is the inability to show joint attention. Joint attention happens when a child and their communication partner use gaze and gestures to divide their attention between a person and an interesting object or event.
Stereotypic or Repetitive Behaviours
Unusual or repetitive behaviours with their hands or other body parts
One of the red flags for autism is moving hands and the body in general in unusual ways. Some children will wave their fingers near their eyes, flap their hands, rock their body or walk on their toes.
Preoccupation or unusual interests
Another red flag for autism is intense preoccupation with non-toy items. Some children become very attached to random objects (a spoon, a block, a piece of clothing) and will become upset if it is removed.
What to do if you notice red flags for autism in your child
While none of these red flags for autism are enough to get a diagnosis on their own, it is important to notice them. When a child’s displaying a combination or stops making gains make an appointment with your paediatrician for advice and potential referrals.
Many parents are unsure of where to turn or what steps to follow to have their child assessed for autism. They simply don’t know where to start to get an autism diagnosis.
Do you have concerns about your child’s development?
Have you brought them up to your child’s physician?
Are you wondering what the process is to get an autism diagnosis in Ontario?
At your child’s 18 and 24 month check-ups the doctor should be screening your child for autism. They’re likely using a tool called the M-CHAT-R (Modified Checklist for Autism in Toddlers – Revised). The M-CHAT-R is 20 questions about your child’s behaviour. No screening tools catch EVERY child so even if your child passes the M-CHAT-R, you can still request the doctor make a referral to a specialist for further testing.
To diagnose autism, the person will use formal assessment tools and their clinical judgement. There isn’t a blood test or a scan that you can do that will show autism. Diagnosticians need to have a lot of training and experience identifying autism.
Paths to an autism diagnosis
There are three ways to get an autism diagnosis in Ontario.
A family physician, a child’s paediatrician, a developmental paediatrician, a neurologist or a psychiatrist can all diagnose autism. OHIP pays for this assessment and it will not cost you anything. If your doctor is not able to reliably make the diagnosis, they would refer you to someone with more experience and training. Many physicians do not give a detailed report of the child’s level of functioning but will simply write a diagnosis letter. However, as with all OHIP services, there could be a wait to be assessed, especially if you need a referral.
A diagnostic hub:
There are 5 diagnostic hubs in the province. The hubs use a multi-disciplinary approach and perform standardized test. Specifically, there is usually a psychologist, an occupational therapist, a speech-language pathologist and a behaviour analyst on the diagnostic team. They will interview you and interact with your child for a few hours, usually over a few appointments. The provincial government pays for the assessment if it’s done at a hub. Nonetheless, the wait for an appointment can be OVER A YEAR. After the assessment you will receive a written report, describing your child’s behaviour and current level of functioning. Usually, the hub will have you come in for a summary meeting to discuss the findings and talk about next steps and referrals. The hub will give you a list of many resources in your community where you can turn for help.
A private assessment:
Some families choose to use a psychologist to provide the assessment and diagnosis. In fact, Autism testing can cost between $3000 and $5000. The psychologist will interview you and will do standardized tests with your child. Many psychologists use a test called the ADOS (Autism Diagnostic Observation Schedule). Often, psychologists recommend that parents not be in the room during testing. It can be very difficult for parents to watch. This is because your natural instinct is to help your child, but the point of the testing is to determine how your child behaves without assistance. Generally, the full assessment takes place over 3 or 4 visits. The first visit is a parent interview. The second and third are the testing with the child. The last appointment is usually the review of the findings and referrals.
Do you need an autism diagnosis to start treatment?
No! Every child who is not meeting their milestones would benefit from early intervention. Accessing Focused ABA , S-LP or OT services would benefit your child, especially while you’re waiting for a diagnostic assessment.
The signs of autism can become noticeable around the age of 18 months. Despite this, on average, autistic children receive their diagnosis at age 4 or 5. The delay is often deliberate, hoping the child will grow out of his/her condition, or to avoid labels, such as “autistic”. Getting an early autism diagnosis for your child will only benefit them.
Unfortunately, the delay in the diagnosis equals lost years of intervention. No child recovers on his/her own from autism. It takes a lot of effort, therapy and a transdisciplinary approach to enhance the quality of life for an autistic child. The earlier the diagnosis, the more time that child will have to reach their full potential.
Taking advantage of the brain’s neuroplasticity
The human brain possesses an incredible ability called neuroplasticity. Basically, neuroplasticity refers to our brain’s ability to adapt and change. The brain can learn and grow to overcome challenges. If a specific part of the brain is damaged or not working correctly, it can develop ways to work around the deficits. Autistic children need to start therapy as early as possible and take advantage of this ability in our brains. The older the child, the more difficult it will be for their brain to change and adapt.
To understand how beneficial early diagnosis in autism is, try not to think of the brain as a static organ. The complex organ is more flexible than we might think, adapting over time and compensating for lost functions. Regular therapeutic interventions, like ABA therapy, can help the autistic child’s brain build new pathways.
Early diagnosis, also beneficial for parents
Parents are usually the first to notice that their child isn’t developing as expected. Getting an early autism diagnosis can relieve distress and help parents focus on next steps. They can seek early intervention, form a support network and they can access several benefits, such as the Registered Disability Savings Program.
Taking your child to a doctor for an assessment is the first step to getting them help. Under the guidance of autism specialists, you will come up with an intervention plan and help your child learn.
Starting therapy from a young age
With autistic children, the key word is “early”. The earlier autism diagnosis and the earlier intervention, the more of a difference it will make. In therapy, the child can develop social and communication skills, and work on challenging behaviours. They will learn new skills and become more independent.
An autistic child who goes to therapy from a young age can develop their strengths, and work toward a better life quality. A diagnosis made within the first three years of life offers the best long-term outcome. Most parents only seek intervention after receiving the diagnosis, but your child can go to therapy before that. You can address worrying signs and work on teaching skills. Reach out to us at Side by Side Therapy to hear about the Early Start Denver Model, an ABA/developmental approach to teaching children with or suspected of autism.
Warning signs of autism
Each child is unique. The warning signs might differ and they might be present at various levels.
Even though you might notice the following signs, getting an accurate diagnosis is vital. Only a specialist can determine if your child has autism and point you in the right direction. If your child gets a diagnosis, they will have access to services and programs that would otherwise not be an option.
Warning signs of autism:
Lack of facial expressions, child does not smile
Limited or absent eye contact
Speech delays (no words by 16 months, no two word combinations by 24 months)
Does not respond to his/her name
Loss of previously gained skills
Does not point to items of interest
Does not like changes (routine, environment)
Prefers to play alone, does not engage in pretend play
Echolalia (persistent repetition of words/phrases, heard recently or in the past).
Early diagnosis, the first steps of the journey
It’s hard to find out that your child has autism. But the diagnosis will give you clarity of mind and help you take the first step of the journey. Together with autism therapists and a powerful network of support, you will create a path forward for your child.
Trust your instinct, especially if you have noticed one or several warning signs. Do not wait until your child is older. Go to a specialist now.
The brain has a unique property called neuroplasticity. This means that our brains are constantly able to change and grow. Children under 5 years old have the easiest time with neuroplasticity. Even when the child has been diagnosed with autism, it is possible to make significant gains that are life changing. We can achieve this through early intervention. Specifically by using the Early Start Denver Model, we can begin even before a diagnosis is made.
Within a therapeutic environment, the autistic child presents a higher chance of developing language, cognition, and social interaction abilities. We can teach skills to overcome the challenges associated with the autism diagnosis. But the essential thing is for the intervention to begin early on.
ESDM: The earlier, the better
Developmental specialists recommend the therapy to start as early as possible, as this leads to the best outcomes. Parents should not wait for the diagnosis but seek the help of a therapist as soon as they have suspicions about their child’s development.
The sooner we start the intervention, the better the outcome is likely to be. Parents might struggle to accept the diagnosis, but they should waste no time in pursuing therapy.
A better chance of addressing behavioural issues
Autistic children often have challenging behaviours which become more challenging over time. Addressing challenging behaviours is generally easier in younger children because they don’t have a long learning history. Having a long learning history means that the behaviour has been reinforced for a long time. Similar to a habit, behaviours with long learning histories are hard to break.
If there are challenging or non-adaptive behaviours present early intervention can replace them with alternative behaviours. The key is teaching replacement behaviours that meet the same needs but are more effective. For example, if a child is taught that they will get your attention if they cry, they will keep crying. They do this because that strategy works. But if you reward a child for using another strategy (e.g.: a word approximation, directed eye gaze or pointing) they will use the new behaviour instead. And then the challenging behaviour will fade away.
ESDM: Individualized intervention from an early age
The therapist will develop an individualized intervention plan, based on the child’s needs, behavioural issues and the use of the Early Start Denver Model Curriculum Checklist. The Curriculum Checklist is a list of skills that are divided into levels that represent different ages. The therapist uses the Curriculum Checklist to assess your child’s strengths and areas of need relative to same age peers. The purpose of the intervention plan is to help the child develop a wide range of skills including: attention, communication and interaction.
As mentioned above, a structured environment will offer opportunities for learning. It facilitates the growth of skills, while it allows the therapist or parent to monitor the progress being made on a consistent basis. The therapist can adjust the plan as necessary, but the chief goal will remain the same: the child learns through play while having fun.
Early Intervention: Families receive support early on
As parents of special needs children, especially autistic children, it is normal to feel helpless and frustrated. Early intervention, though, can be highly beneficial for the entire family. It can provide support early on, reducing the amount of stress parents experience. Having an action plan and strategies to use will help parents to feel empowered and as though they are taking action.
It is vital that the parents are also implementing the strategies and using therapeutic interventions with their children. The child has a limited number of hours with the therapist each week but many more hours with their parents. These hours should be maximized!
What matters is that they capture the attention of the child and pursue communication. Being creative and silly will go a long way.
ESDM: A combination of ABA and play
An experienced therapist will give the child time to become accustomed to the unfamiliar environment, chaining skills together to create a smooth session. It takes time to build the relationship, and only then will the therapist focus on addressing behavioural issues, cognitive and speech delays, etc.
Taking advantage of the brain’s neuroplasticity
We see the best results up to the age of five years, as that is when the child’s brain is most malleable. We can unleash the learning potential in therapy and limit the effects of the autism diagnosis. As a result, the overall quality of life can improve, thanks to the newly learned skills.
The benefits of early intervention using the Early Start Denver Model in autistic children are obvious. The earlier the child enters a structured, therapeutic environment, the better his/her progress will be. Parents should actively collaborate with the therapist, practicing taught strategies at home and helping their children unleash their full potential.
To learn more about how Side by Side Therapy can help your child with an Early Start Denver Model program, please connect with us!
The government announced a huge investment into a new program called the Ontario Autism Program. This announcement was very exciting at first. Once it was studied the reality sank in: children would be removed from intensive services at age 5.
In June 2016
Michael Coteau, the Minister for Children and Youth announced changes to the Ontario Autism Program. The plan was to offer evidence based Applied Behaviour Analysis services at amounts that were based on need. Families that had been removed from IBI would receive $10,000 instalments until the new program was introduced in 2017. The children entering the Coteau plan would be the luckiest in the province, receiving the most therapy for the longest duration.
From the start, the government presented it as a program that they would improve and expand. The foremost goal was to facilitate access to therapy and reduce the financial burden on families. Key points of the OAP included: family-centred decision making, individualized intervention and the possibility to choose a specific private provider.
Changes to the OAP in 2018/2019
Doug Ford became the Premier of Ontario in June 2018. He brought a new government, changing from a Liberal government to a Progressive Conservative majority. In September 2018, the Ford government quietly instituted a pause on new service offers to children on the waitlist. This freeze dramatically increased the waitlist. A few months later, Lisa MacLeod, the Minister of Children and Youth used the ballooning waitlist as the reason for making dramatic changes to the OAP Funding.
In February 2019
Lisa MacLeod, announced a “new and improved” version of the OAP. This plan provided Childhood Budgets to autistic children. The budgets were based on the child’s age when they began therapy. Younger children being eligible for much more funding than older children. One element of the childhood budgets was income testing, meaning that families with higher incomes would get less funding. There was no consideration for any extenuating circumstances (level of need or availability of services in the child’s location).
In March 2019
Lisa MacLeod announced that SLP and OT services would become eligible expenses for the childhood budgets. She also announced that the income testing would be removed. The announcement also allowed children currently under the Coteau OAP to have their funding extended for an additional 6 months.
In June 2019
Todd Smith took over the Autism file when Lisa MacLeod became Tourism Minister.
In December 2019
Todd Smith announced that the province would follow the recommendations of an Advisory Panel it had established. Despite having previously stated that the new program would be ready by April 2020, Minister Smith stated that the new program would be implemented by April 2021. The reason for the extra year was to let the province to ‘get the program right’. The main recommendation was to move back towards a needs-based funding model and to remove the childhood budget.
The province also announced that they would begin offering one-time funding payments to families. These payments were based on the child’s age to bridge the program until the needs-based funding could be rolled out. Children aged 1-5 years would receive $20,000 and children between the ages of 6-17 years would receive $5,000. The newest OAP would include 4 pillars:
Foundational Family Services
Early Intervention and School Readiness Services
Mental Health Services.
Where do families stand now?
Some children are still on the Coteau OAP program. These children are called ‘Legacy Kids’. Some children aged out of the program and received nothing. Some families accepted childhood budgets and have spent those funds. They should apply to receive one-time funding. Many other families on the waitlist still have not received invitations to apply for the one-time funding.
The Covid-19 pandemic has totally upended the therapy of autistic kids because most providers were forced to stop services. The province has extended the deadline to spend the one-time funding by 6 months in an effort to give families time to use their funds. Service providers are gradually beginning to reopen. Families are scrambling to put together teams for their children.
Receiving a diagnosis that your child has Autism Spectrum Disorder (ASD) is not only scary but overwhelming too. There are so many questions and while there is a vast amount of research to turn to these answers often only result in further questions and possibly further confusion.
It is important to rely on your treatment team including a Board-Certified Behaviour Analyst in Toronto (BCBA) for support and guidance as they understand just how exhausting and challenging such a diagnosis can be. Working together will help with your child and family’s success both at home and at school.
Here are some helpful tips to try when your child gets an autism spectrum disorder diagnosis:
1. Become an Expert in your Child’s Needs, Likes and Dislikes
Each child with autism spectrum disorder is different and we need to embrace, understand and support their differences. This can be achieved through research and asking questions about autism spectrum disorder and more specifically your child’s individual needs. As each child is unique, you must remain open minded about their experience of having autism. Once you gain some knowledge you will then be able to ask insightful questions to help build the best treatment plan for your child.
The best place to start is with your child’s family physician, they will be able to refer you to an autism consultant who can work with you to develop a team. Your physician should also be able to provide you with useful resources such as finding the best Applied Behaviour Analysis (ABA) therapist or group including Board Certified Behaviour Analysts (BCBA) for your child. Remember finding the right therapist may take time and patience. There is no such thing as “one size fits all” in a treatment plan.
2. Find Help through Technology
As technology has become an integral resource within our society, it has become a very useful tool for parents of children with autism spectrum disorder. Firstly, a vast array of knowledge and research regarding your child’s diagnosis and treatment can be gained through the internet. Secondly, technology is also used as a resource for community building through social media including parenting groups and intervention discussion forums. Here there is an opportunity to seek the support and experiences from parents in similar situations and professionals in the field. These communities are amazing and can help one to realize they are not alone.
Lastly, and perhaps most importantly, technology holds a critical use for autism spectrum disorder children that have communication difficulties and is used as a tool to remove this barrier. AAC (Alternative and Augmentative Communication) gives a voice to children who cannot speak using tablets or computers with specialized apps that utilize text or image to speech technology. These are sometimes called SGD (Speech Generating Devices).
3. Get Intervention as Soon as Possible
Parents that feel that their child might have autism spectrum disorder should speak with their child’s physician as early as possible to investigate a diagnosis. Don’t allow your child’s doctor to dissuade you or convince you to ‘wait and see’. With an early diagnosis and then prompt invention parents are able to start working towards helping their child to address interfering behaviours and increase communication skills.
Intervention is most effective in younger children. If your child’s interfering or challenging behaviour (e.g.: outburst in public) is addressed and dealt with early on, then the hope is that through reinforcing positive or desirable behaviour, the child will eventually be independent in the future in the same situations. Positive outcomes are possible for older children as well, so don’t give up if your child is older when they begin to receive treatment.
4. Ensure your Child’s Treatment is a Family Affair
An autism spectrum disorder diagnosis not only affects the diagnosed child but it affects the entire family. It’s therefore necessary that the therapy plan includes siblings’ and parents’ opinions and experiences. Since schedules and rules set out in the plan will put expectations on the entire family, their input and buy-in is imperative for the success of the program.
It is also vital that family members are involved in the treatment plan to ensure that generalization occurs. This means that your child is able to demonstrate all the skills they are learning in new settings and with new people instead of only with the treatment team. It may become a balancing act for you, however with support, consistency and careful consideration and execution of the therapist’s recommendations your day-to day routines will become less overwhelming.
5. Trust your BCBA, Treatment Team and the Process
As mentioned, finding the right BCBA and program can be a difficult journey, however, once this is accomplished you will soon see that you are on the right path. As your child is unique in their needs you must remain optimistic and open-minded. There will be necessary tweaks and adjustments along the way and through trial and error, you will certainly see positive changes.
Finding a team that suits your family’s needs and expectations is extremely important. You will also need to ensure there is a constant flow of communication between your family and your child’s BCBA so that modifications can be implemented and changes made whenever required.
6. Celebrate the Successes
As you continue to fill your toolbox with more tips and knowledge it will open the door for greater success. At times there may be a lot of growth and positive changes and at others, there may be little or none. It is important to stay focused on the positive and reflect on the successes and celebrate them frequently. Continuing to stay on course and provide consistent routines and expectations for your child. The more you celebrate the successes the more likely it will be that you feel good about your child and family’s future.
7. Make Safety a Top Priority
The challenges and long-term responsibilities that come with an autism spectrum disorder diagnosis can be additional stress placed upon an autism parent. To help ease the sense of being overwhelmed it is important to get organized and put proper measures into place for a “just in case” situation (for example, looking into life insurance for family members). As children with autism can engage in more dangerous behaviour (wandering, mouthing and self- injury) a safety plan is essential.
It is necessary to develop a plan to address these safety risks with your treatment team. For example, you should ensure that your child always carries or wears identification, especially if they are a wanderer. A simple google search will yield many options for safety tools for your child with autism spectrum disorder.
8. Work on Establishing a Good Sleep Routine
One of the challenges many children with autism spectrum disorder face is difficulty sleeping. Poor sleeping can exacerbate some of the challenging behaviours associated with autism such as impulsivity, compulsions, hyperactivity and physical aggression. Good sleep hygiene is vital to providing your child with quality restful sleep.
Keep in mind a few things while creating a routine, for instance: maintaining consistent times for going to bed and waking up; how much light is in their bedroom while they’re trying to sleep; ensuring your child has enough play time during the day and not too much screen time prior to bed; perhaps instituting a wind-down quiet period before bed; taking sensory issues into account, i.e. itchy pajama’s, white noise etc.
If your child has recently received an ASD diagnosis and you are looking for ways that the Ontario Government can support you, please know that changes to the Ontario Autism Program are in the process of being established. They are working towards creating a new “needs -based and sustainable autism program”. Eligibility for this program has the following criteria:
To register for the Ontario Autism Program, your child must:
be under age 18
currently live in Ontario
have a written diagnosis of autism for a qualified professional
Your child’s written diagnosis must include:
your child’s full name and date of birth
the date of your child’s assessment
a statement indicating that the child meets the diagnostic criteria for autism spectrum disorder
the qualified professional’s name and credentials
For registration information please contact the central intake and registration team at:
The site notes that if you have registered in the Ontario Autism Program before April 1, 2019 you do not need to register again. As well, they mention that once your registration is complete, your child will be added to their waitlist and you will receive a letter from the ministry when it is time to complete further steps to receive funding.
Additional services and support are provided by the Ontario government for children with special needs, these are listed below: