“How long until they’re like other kids their age?”
Each week I speak with 10 or so parents, most of who have newly diagnosed autistic children.
These are questions that many parents ask. It’s so difficult to ask these questions and it’s equally difficult to answer them. I am always honest when I answer. I tell them that I believe that each child can make change and learn new skills but that there is no cure for autism. It’s not for me to say how ‘normal’ they will become. I try to stress to these parents that their child has so much potential and with the right mix of learning opportunities they will grow into incredible little humans.
Taking the expectation of being ‘normal’ off the table is a relief for some parents. Others aren’t ready to hear my message. They’re still grieving the loss of the child they thought they’d have. One of the most difficult things for people to handle is uncertainty. Humans are hardwired to have a plan or at least a destination. We dream of the future. When your child is diagnosed with a special need your journey takes a turn. There is a wonderful poem that conveys this message so beautifully. It’s called ‘Welcome to Holland’ and it was written by Emily Perl Kingsley in 1987.
(I need to say that no one poem or piece of writing will perfectly sum up the experience of the entire special needs parenting population. This poem should be taken for what it is, one woman’s perspective, at one point in her life. Some people will identify with it and others will not.)
What Should Parents Do?
There are a number of evidence based treatments for autism. Research the options that are available in your area and decide which aligns with your beliefs and goals. Applied Behaviour Analysis (ABA) has the most research backing it’s effectiveness for autistic children. There is also Speech Therapy that can be essential for autistic kids as well as Occupational Therapy. There is a lot of overlap between the disciplines. Sometimes your child’s needs can be addressed by the ABA team alone, but sometimes the expertise of a specialist is required. Any therapy team you work with should be open to collaboration with other disciplines that provide evidence based therapy.
Alternative Cures For Autism
As with any issue that affects a group of people, there will always be bad actors who try to dupe vulnerable people. I always caution my clients against spending resources on non evidence based interventions. Resources can be money, time and energy. Very few people have unlimited resources. When you devote resources to one treatment, automatically you’re taking resources away from the others. You want to ensure that you’re putting your resources where you’ll get the most benefit. Some examples of non evidence based interventions are: biomedical interventions (chelation therapy, autism diets, supplements) or other treatments like swimming with dolphins or hyperbaric oxygen chambers. While these treatments may have many glowing reviews look for peer-reviewed, double blind controlled studies to use as your base of information when determining if something is evidence based.
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?
This will be the first instalment in a series about the funding for autism families in Ontario.
I’ve worked in the field of Autism and ABA therapy for 16 years. I’ve worked with a lot of children under different funding circumstances. Some (few, very fortunate) families have the means to pay out of pocket for the services that their child needs. Most families rely on provincial and federal funding to pay for therapy and other services that their child requires. When the funding is used up services are often put on hold.
Having my own therapy services company has allowed me to see the heartbreak of a family pausing services. Services that were improving their child’s life. Services they just cannot afford. We offer a sliding scale, we work with families to figure out payment plans, we advocate to the government. Sometimes families just don’t have another option and pausing services is necessary.
What autism funding is available to families?
There are a few different programs that cover some of the cost of raising a child with autism. Right now, families in the province can apply to the Ontario Autism Program for funding for their children with autism diagnoses. The funding allotments are based on age. With children under 5 years old receiving $20K and children over 6 years receiving $5K. In August, I wrote a short blog post about the OAP‘s history. The government claims to be working (but this post isn’t about politics!) towards implementing a needs-based funding model. Needs-based funding gives families the funding they need to get the therapy their child requires. Side by Side Therapy offers excellent ABA Therapy near me.
Special Services At Home (SSAH) is a provincial program that helps families pay for services both inside and outside of the home. The amount of funding that each child receives is based on what their needs are, what other services they are accessing and other available community resources. SSAH funds are meant to aid families in two broad areas: personal development & growth and respite. Also, there have been changes to the SSAH eligible expenses due to Covid19.
Assistance for Children with Severe Disabilities is a fund for low to moderate income families who have a child with a severe disability. The funds provide financial relief for families raising a child with a severe disability. The amount of funding received depends on the size of the family, the family’s income, the severity of the child’s disability and the costs associated with raising the child.
What else is out there for autism families?
Disability Tax Credit (DTC) provides tax relief to a person with a disability or their parents (if under 18) to account for some of the cost of living with a disability. To qualify, a medical practitioner has to complete a form that states that your disability is severe and prolonged.
Registered Disability Savings Plan (RDSP) is a savings plan that helps parents or others save for the future of a person with a disability. Withdrawals made from an RDSP they are not considered taxable. The beneficiary of the RDSP must qualify for the Disability Tax Credit.
Canada Disability Savings Grants (CDSG) is a matching program offered by the federal government. They will match your deposits up to 300% (Based on your income and your contribution). You must have a RDSP to qualify for the grants. Canada Disability Savings Bonds (CDSB) is the money that the Canadian government contributes to the RDSP’s of low and modest income families. You can receive up to $1,000/year with a maximum contribution of $20,000. The amount you receive is dependent on your family’s income.
Autism Ontario has some one to one worker reimbursements available for families. The child’s name is entered into a draw when the application and proof of diagnosis are submitted. Approximately 500 children receive the grant each year.
Jennifer Ashleigh Children’s Charity is available for families experiencing financial pressures of raising a child with special needs. The fund covers a variety of things from emergency costs to housing costs incurred while caring for your ill child. They also cover some therapies.
A parent pointed out to me that perhaps it isn’t the number of funds or the amount of money that’s available that is lacking in our province. But rather that the application process is too difficult and too confusing for many families. Come back soon to read more about the funding in Ontario.
Autistic children face challenges daily, and social communication is one of the most difficult to conquer. What is social communication? Challenges in social communication are associated with autism diagnosis. However, each child is unique and is impacted to a different extent. Some children may start an interaction, while others will prefer their peers initiate the exchange. While autistic children might show an interest in engaging with others they can still have challenges.
Don’t make the mistake of believing that autistic children do not want to interact. The key here is to support them in interacting with their peers, offering tools for adequate communication.
Social communication is a group of skills that include both verbal and nonverbal communication, social interaction and understanding others (Children’s Minnesota) . Many people just seem to have this skill naturally. Autistics often need direct teaching in order to master this skill.
Why is social communication difficult?
The first thing we have to remember is that many autistic children need support in learning how to communicate. Some of them may not respond when talked to while others require a bit of time to plan an answer.
Eye contact is a major issue. In our society, eye contact is a very important behaviour. A lot of value is placed on looking ‘someone in the eye’ or showing that you’re paying attention by maintaining eye contact. Many autistic children avoid it altogether, while others find it uncomfortable.
Eye contact used to be considered an essential goal. However, recent research and an effort to include the voices and experiences of autistic adults has decreased the value and necessity of these types of goals. Many clinicians are adopting an approach that teaches replacement behaviours that meet the same goals as eye contact. For example, one of the biggest reasons people give eye contact is to convey that they are paying attention and understanding the other person. Alternative behaviours, such as turning your body to the speaker, nodding, saying words like “I see”, “I know what you mean”, “I get it” all convey the same message and do not require eye contact.
While a typical child will learn through imitation, an autistic child will likely need explicit teaching. It is important not to give up and consider the child’s point of view. If he/she cannot communicate his/her own wants and needs, frustration can easily build up.
Things to work on in therapy
Social communication represents one of the main therapeutic objectives in many ABA Therapy programs. Depending on the age of the child and his/her developmental level, the therapist will teach the child how to interact with others and interpret their behaviour correctly. With older kids, one might also work on teaching the effect one’s own behaviour has on others.
Therapy will involve teaching the child to recognize and understand social cues. As mentioned, these children do not show these behaviours instinctively and they need to learn how to adjust their behavior to fit each social context.
Language is a huge part of social communication. Using social situations, the therapist will work on both the expressive and receptive language. Taking into account the potential of the child, they will work not only on verbal communication but also on body language and facial expressions. He/she will also teach the child to adapt his/her tone of voice when possible.
It is a fact that autistic children often take things literally, which can lead to frequent misunderstandings. For this reason, when appropriate, therapy will include teaching the child to understand figurative language, including metaphors.
How will therapy help improve social communication?
While the beginning might be slow, over time the child will develop their abilities to interact. They will become more confident, seeking interaction with peers. Improving social interaction skills will remain a primary aim throughout all therapeutic sessions.
As in all ABA programs, each objective will be broken down into manageable steps. Often, the therapist will provide visual support and plenty of opportunities for the child to practice the newly learned skills. Positive reinforcement makes the behaviour more likely to happen again and it has the added benefit of boosting the child’s confidence.
In time, and provided the child’s development allows it, the therapeutic objectives can become more complex. Autistic children can learn to interpret subtle non-verbal cues and also to recognize emotional responses. They can master conflict resolution and pick up the best ways to develop friendship skills. Social Communication therapy can be funded by the Ontario Autism Program.
What about non-verbal children?
Non-verbal children can communicate using various strategies, but they will need help. The therapist can teach them to use gestures or sign language to communicate and introduce augmentative and alternative communication systems.
Some autistic children might never speak. But this does not mean the gate to social communication is shut. They still have plenty of opportunities to communicate with their peers, and it is up to the therapist to find the best solution for a non-verbal child.
While we can improve social communication in therapy, it is also important to educate people on the challenges autistic children face in this area. It is all about accepting differences and meeting these kids on their level, welcoming and honouring any form of communication and/or interaction.
Communication represents one of the core challenges for autistic children. Speech Therapy in autism treatment is essential. They may have difficulties engaging in a conversation. Not picking up on social cues, they might find it hard to interact with their peers.
A speech-language pathologist can help autistic children improve their communication and social skills. Addressing key areas, the therapy team will help the child overcome daily challenges and learn how to function within a social context.
What are some of the challenges caused by autism?
It depends on the severity of the condition – autism is a spectrum. Some children may not understand non-verbal communication easily, while others will have trouble with spoken language. They may need help learning to read or write or engage in conversations with others.
In severe forms of autism, the speech/language impairment will be more obvious. These children might not speak at all, or they might resort to challenging behaviours to express themselves. They may not seek interaction with others or prove unable to maintain eye contact.
Speech/language delays are among the first noticed by parents. Many go to their paediatrician or family doctor stating their concern that the child has lost some or all of the previously gained words.
Others are worried that their child constantly repeats certain words or phrases, either heard on the spot or weeks before. This is called echolalia. It can also serve the purpose of communication. The therapist will help the child resort less to repetition and rely more on novel speech.
How can Speech-Language Pathology help?
The first thing a Speech-Language Pathologist (S-LP) does is assess communication, articulation and social skills. The S-LP will notice any red flags, and work out an intervention plan to improve the areas. The primary goal is to help the child become more communicative within the home, school and social environments.
When we say communicative, it is important to remember that might not always refer to verbal language. There are children who will use other communication methods to interact with other people, and they will need help to master these. Some examples of other methods of communcation are: sign language, picture exchange, typing/writing or high-tech speech output devices.
During S-LP sessions, autistic children might work alone or in groups. The therapist will facilitate interaction, teaching the child to use appropriate communication behaviours. The child will learn to maintain eye contact, take turns and communicate according to the context and other’s cues. They will also work to develop reading and writing skills where possible.
A non-verbal child can communicate
You might not know this, but 90% of communication is non-verbal. If an autistic child presents severe language impairment, he/she might still communicate. Through speech-language pathology, he/she can learn alternative means of communication.
The S-LP can teach him/her to understand and use gestures correctly. Communication systems can be helpful, including those based on pictures or visual supports. Some children find it easy to communicate with the help of electronic devices. The goal is to find the best method for each child, taking his/her abilities and challenges into consideration.
What about verbal children?
Once again, the intervention depends on the language and communication difficulties the child is experiencing. All children must learn the appropriate use of language and how to have a conversations with their peers and those around them.
At more advanced levels, Speech-Language Pathology might help the child understand the complexity of language. For instance, that a word can have more than one meaning or how certain expressions are used figuratively.
Social communication, one of the primary goals of S-LP
Human beings are social creatures by nature, and autistic children do not represent an exception. With the help of S-LP, they can learn how to interact with their peers and overcome the communication their challenges.
The Speech-Language Pathologist will work with the child to adapt his/her language to the correct context. They will explore non-verbal cues in a social setting and practice with other children.
It takes time, but some children can learn to recognize verbal and non-verbal cues, improving their communication abilities. This will help them feel less frustrated. When these skills improve, the challenging behaviours often become less frequent. This will have a positive effect on the academic outcome.
S-LP, helping with early diagnosis of autism
When parents have concerns about their child’s development, speech and language delays are present at the top of the list. The Speech-Language Pathologist can help with the early diagnosis of autism, recognizing the red flags associated with communication and social skills problems. The earlier the diagnosis of autism is made, the more successful the specialized intervention can be.
S-LP and the Ontario Autism Program
Your child can access S-LP services using their OAP funding (legacy funding, childhood budgets and one-time interim funding). Here is a list of eligible services and supports that can be purchased with the funding.
When your child receives an autism diagnosis you are introduced to an alphabet soup of acronyms. IBI, ABA, OAP, FA, IEP, IPRC; the list is endless. In this post you’ll learn the differences between two of the most used and often confused: IBI and ABA.
What is ABA?
ABA stands for applied behaviour analysis and it is the science of learning and behaviour. There are a few laws of behaviour, very much like the laws of gravity. These rules are reliable, observable and measurable. The focus of ABA is to change socially significant or meaningful behaviour. That means that the goal is to improve people’ lives by helping them achieve more independence and access to the things that matter to them.
What is IBI?
IBI stands for intensive behaviour intervention. IBI is the intensive application of the science of ABA. For a program to be considered IBI, it has to occur more than 20 hours per week. Because of the intensity, IBI programs are usually comprehensive. This means that they cover many domains of learning. IBI programs are often recommended for children with level 2 or 3 autism (previously known as lower functioning children).
What are socially significant behaviours?
Socially significant or meaningful behaviours are the behaviours that matter to you and your family. Some examples are: communication, self-care (toileting, hygiene, self-feeding) and reducing challenging behaviour. Independence in these areas will allow your child to participate more fully in life.
In an IBI program, your child will learn communication and language, social skills, play skills, pre-academic or academic skills, self-help skills, motor skills and much more.
In an ABA program, the therapy will focus on one or two specific goals that you want to address. Some parents choose to focus on challenging behaviour when doing a focused program. Also, some families find it helpful to focus on ‘high impact’ behaviours like toileting or feeding.
How do I decide which program my child needs?
Choosing which program is best for your child is a difficult decision. There are many factors that will play a role: your child’s needs, their other programs/therapies, location, finances, waitlists and your beliefs about education. You know your child best and it’s important that the therapy you choose fits your lifestyle and beliefs. Therapy plays a big part of your life and it needs to make sense for your family.
Working with a Board Certified Behaviour Analyst (BCBA) that you can trust is really important. The BCBA will do an assessment to figure out what skills and needs your child has. Some common assessments are: the Assessment of Basic Learning and Language Skills – revised (ABLLS-r), the Verbal Behaviour Milestones and Placement Program (VB MAPP) and PEAK Relational Training System. These are curriculum assessments that determine current skills and areas of need. They do not provide a new diagnosis. The BCBA might also do a Functional Analysis (FA) to determine the function of a challenging behaviour. Based on the results of the assessments your BCBA will make a recommendation that is specific to your child.
You should be fully aware of and give permission for each part of your child’s program. The clinical team must explain how the skills will be taught. Behaviour does not happen in isolation, so you will need to implement the same strategies outside of therapy.
Who is on an IBI/ABA team?
There are 3 levels of clinicians on an IBI team: instructor therapists, Senior Therapists and the BCBA or Clinical Supervisor. The instructors are delivering the therapy on a daily basis. The Senior Therapist does the assessment and follows the programming to ensure that it is being properly executed and that the child is making progress. The BCBA works with the Senior Therapist to do the assessment and determine what the goals should be. They will work together with the Senior Therapist to write the programs and train the instructors.
How much does IBI/ABA cost?
Each centre is different and ABA is not regulated in Ontario (yet!) but you can expect to pay roughly $55/hour for the Instructor Therapist, $75/hour for a Senior Therapist and $150/hour for the BCBA. At Side by Side Therapy, we use a 10% supervision model. That means that for every 10 hours of therapy your child will have 1 hour with either the Senior Therapist or the BCBA.
The Side by Side Therapy Process
At Side by Side Therapy we determine which of our 4 streams of ABA service (IBI/Comprehensive ABA, Focused ABA, Parent Coaching or Behaviour Consultation) will meet your child and family’s needs. We write programs specifically for each client. Each program is different.
You are able to use your Ontario Autism Program (OAP) funding with Side by Side Therapy. We will help you navigate the process and will ensure that our services fall within the OAP guidelines.
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.
Equality and equity are words that are often understood as being synonymous as they both have the implication of fairness, however, the two meanings are actually very different. Equality means to have the same opportunities as everyone else. Equity speaks to ensuring that everyone has the opportunities they need to be successful.
There have been many political movements that have espoused equal rights: women’s groups, minority groups, autism advocacy groups and other disability rights groups.
With equality, it is assumed that everyone has the same starting point and should be treated in exactly the same way. While with equity, the belief is that not all people start at the same point and for that reason, each person should receive (based on their distinct abilities) what they need to be successful. In understanding the difference between the two, we can conclude that fairness does not mean equality.
Modifications and Accommodations for Autism
While the idea behind equality is to treat everyone “fairly” and “equally”, it has sadly missed the mark when looking at fairness around Autism Spectrum Disorder (ASD). Assuming that everyone is equal and is starting from the same place (which we know is not true, especially in autism) can actually create unintentional barriers. For instance, modifications are necessary for those with autism to be successful in their daily routines.
Making practical changes allows the starting point to truly become one of fairness. Simply put, modifications and adjustments are how we can promote fairness and ensure that all people are provided with the tools they need to achieve success.
An example of these modifications put into action is an autism framework is that of a child who has sensory concerns or challenging behaviour and has trouble sitting in a circle on the floor with the rest of the class. Pressuring the child to join on the floor may create resistance or even a meltdown which affects not only the autistic child but the class as a whole. A small concession that a teacher may make is to allow the child to sit on a chair in the circle to help with engagement and integration.
Yes, this may seem to some degree “unfair” to the other children or “special treatment”, however with this minor adjustment being made to accommodate a child that has additional needs, the teacher has effectively created a more positive and successful learning environment not only for the autistic child but for the entire class as well.
We cannot and must not expect every child to fit into one box and hope that success will be the same across the board. We have to realize that accommodations and flexibility provided by parents, professionals and autism caregivers are not only kind but are actually essential to achieving true equity.
As these adjustments are necessary, we need to position them as being so. Instead of the modification being looked at as unfair, it rather should be seen as levelling the playing field to ensure fairness. If we don’t make a big deal about these accommodations than others (classmates, siblings etc.) won’t either. We need to keep in mind that it’s not only those with autism that are different, but we are also all different in our own way and therefore have different capabilities and needs.
In focussing too much on equality and fairness, we end up overlooking the wonderfulness of difference. Instead, we need to look at each person individually to ensure equity and flexibility are at the forefront. Then and only then we can indeed provide fairness in its truest form.
To further exemplify, here in Ontario, Canada all of the changes that are being proposed and made regarding the Ontario Autism Program’s funding is a prime example of the misunderstanding surrounding equality and equity. The province seems to be under the impression that allocating the same amount of funds for children who fall within provincially designated categories (age, etc). will provide equality across the board. However, where the mistake lies is that autism does not affect each person in the same ways.
Therefore, funding and resources should not be allocated based on provincially set rigid categories such as age, and should instead be provided and distributed based on individual need. As autism falls on a spectrum from mild to severe, one child who is nonverbal may require, for example, far more Applied Behaviour Analysis (ABA) Therapy or Speech Therapy, than a verbal autistic child. This example is just one of many reasons why “equality” in this case will just not work.
Below is a helpful example of a lesson that can be played with your children to help explain this confusing topic:
The One Size Fits All Band-Aid Lesson – Ask the children to share their most serious injury: some may say a broken arm, a dislocated shoulder or a cut on the forehead. Once the injuries have been acknowledged, explain to them that your solution to heal them is to provide them each with a band-aid.
This solution will most likely raise some confusion to the children, as how is a band-aid supposed to fix a broken arm or a dislocated shoulder? This unhelpful solution shows that there is not one solution to all situations and that each situation needs to be addressed in it’s own way. Even though using the same solution (the band-aid) may in theory seem fair, how can this “equal” method of treating three different injuries be acceptable? All that is accomplished is that only a small number of people actually get the help they need while the rest of the group suffers.
Once again, it is important to remember that there is a difference between equality and equity. Fairness can only truly be gained with compromises and modifications which ensure that all people are indeed given the tools they need to be successful. Would you not agree to a person with bad eyesight getting glasses or a non-english speaker having a translator at the hospital? It is a similar situation when making adjustments for autistic children and others with exceptionalities.
We know that not all people are born the same, and in keeping this in mind, we need to continue to work towards levelling the playing field to ensure actual fairness is received.
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:
Hello, my name is Lindsey Malc. I’m the founder and Clinical Director of Side by Side Therapy. In 2013, I became a Board Certified Behaviour Analyst. I have spent my entire career working with children with special needs and their families. I have extensive experience in clinical as well as community settings. I have worked primarily with autistic children but have considerable experience working with typically developing children with challenging behaviour as well.
I graduated with a Master of Applied Disability Studies degree from Brock University. I also hold an Honours Bachelor of Social Work degree from Lakehead University. I worked for many years at Zareinu Educational Centre (now known as Kayla’s Children Centre). At Zareinu, I held many positions, from classroom assistant to Behaviour Analyst. In my 14 years at Zareinu, I was fortunate to learn from a trans-disciplinary team of therapists who were passionate about helping our students achieve their maximums. Working with Psychologists, Speech-Language Pathologists, Occupational Therapists, Physiotherapists, Social Workers, Special Education Teachers, Early Childhood Educators and Recreational Therapists provided me with a very well rounded understanding of and respect for these vital disciplines.
How I, Lindsey Malc, can help your child and family
I will help you better understand how you and the environment are impacting and maintaining your child’s behaviour. Using Applied Behaviour Analysis, I will provide you with alternatives and help guide you to effective ways that you can change your child’s behaviour. Looking at the antecedents, behaviours and consequences will be the starting point for this service. We will meet weekly or biweekly and will discuss what has happened since our last meeting. I will ask you to take some data because it can be difficult to remember everything and then analyze the information and identify patterns.
I work with private schools or daycares to identify the function of challenging behaviour and to develop intervention plans that will be effective and easy to implement. Individual programs or class-wide behaviour interventions can be developed. Realistic data tracking and follow up are provided. These meetings can happen weekly, bi-weekly or monthly depending on your needs.
If your child with autism or other developmental disability is struggling with a specific skill or skill set, I can develop a targeted intervention to address this need. I would develop the intervention and teach you or a caregiver how to implement it. We will meet weekly or bi-weekly. Manageable data collection would be an integral part of this intervention with the goal of empowering you to implement the same strategies to address future goals as they arise.
If you’re looking for a comprehensive ABA Therapy program, to address all areas of your child’s development I can be the Clinical Supervisor for your child’s ABA program. I qualify as a Clinical Supervisor for the Ontario Autism Program and am listed on the OAP provider list. I will complete a curriculum assessment and develop all of the teaching programs and targets for your child’s ABA program. I am happy to work with you to develop your child’s treatment team and to train the staff in all of the behavioural interventions that they will be implementing. Supervisions would occur either weekly or monthly, depending on the supervision structure of your ABA team.
If you are pursuing BCBA or BCaBA certification, I am also available to supervise all of part of your experience hours.
I would be happy to discuss your ABA Therapy programming needs. Please don’t hesitate to contact me.