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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 (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 for facing an ASD diagnosis and treatment:
1. Become an Expert in your Child’s Needs, Likes and Dislikes
Each child with ASD is different and we need to embrace, understand and support their differences. This can be achieved through research and asking questions about ASD 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 ASD. 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 ASD 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 be on the spectrum 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 ASD 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 alongside an ASD 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.
8. Work on Establishing a Good Sleep Routine
One of the challenges many children with ASD 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:
- Healthy child development programs, including:
- Rehabilitation services delivered by children’s treatment centres
- Special needs resource teachers in child care settings
- Special Services at Home program
- Assistance for Children with Severe Disabilities program
For more information please visit: https://www.ontario.ca/page/ontario-autism-program