“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.
Many parents are unsure of when or how to tell a child they’re autistic. It can be a very sensitive subject and without some thought it can be tricky conversation to navigate. Crane, Lui and Davies (2021) recently published a study. It highlighted some important themes in having this discussion.
Important themes when telling your child they’re autistic:
Theme 1: Having open and honest conversations about autism
The first theme highlighted in Crane, Lui and Davies (2021) was Normalizing the conversations about autism symptoms. Parents reported that by having frequent and frank discussions about the way that their lives are affected were important in creating an open dialogue. Conversations that began when the child was young helped the child avoid having preconceived ideas about what autism is. This allowed them to have their own experience without being weighed down by the ideas of others.
Theme 2: Creating a shared understanding
Many parents of autistics either have autism themselves or share some of the autistic traits. Showing your child that you experience the same things that they do will create a shared understanding. This gives you some ‘street cred’ when suggesting strategies for your child. The parents also discussed that sharing their lived experiences helped them to understand each other and brought trust.
Theme 3: Positively supporting the child’s differences
Many parents noted that they preferred to use difference as opposed to disorder when describing their child’s needs. They felt that this was less stigmatizing and easier for children to understand. Each person is different and that does not decrease their intrinsic value. Refocusing their child’s attention from their challenges to their strengths was also a common strategy among the parents surveyed.
Theme 4: Adjusting the conversations to the specific child’s needs
Many of the parents that participated in the study noted that the conversations should be specific to the child’s lived experiences and not broad and sweeping. Parents should try to identify areas of interest and capitalize on that motivation. Some referenced having autistic role models as being extremely helpful for their children.
When should you tell your child they are autistic?
There is no rule about when is the right time to tell your child about their diagnosis. It is important to take chronological age as well as developmental age into account when deciding if your child is ready. They need to understand the meaning of the words you’re using. However, they might be giving you clues about their readiness. When your child begins asking questions like “What’s wrong with me?”, “Why can’t I ________”, “Why is this so hard for me but everyone else can do it?” or even “What’s wrong with everyone else?!” they’re likely ready to learn about their diagnosis.
Time of day should also play a factor in your conversation. You want to make sure you’ve got enough time to answer all of your child’s questions. The conversation shouldn’t feel rushed or interrupted. Before school or at bedtime are not ideal times for this topic.
We’re here to help you if you’d like to talk about how to tell your child that they’re autistic. Connect with us for a no charge/no obligation consultation. You can also check out of Autism FAQ for some commonly asked questions.
ABA uses a number of different strategies. Way more than 5, but here are 5 of my favourite (in no particular order).
Strategies used in ABA
Cues or hints that help the learner know what they should do are called prompts. They can be either visual, verbal or environmental. There are prompt hierarchies that organize the different levels of prompts based on how much support they give the learner. The goal is to reduce the level of the prompt so that the learner is eventually independent. Most learners need some kind of prompting when learning a new skill. It is possible for the learner to become dependent on the prompt. This happens when the prompts are not methodically faded out. The learner never moves past the stage of requiring the prompt in order to engage in the behaviour.
Behaviour contracts are like other contracts. They spell out the expectations and what will happen if they occur or don’t occur. The Behaviour Analyst and the learner both agree to the contract. A behaviour contract is a collaborative effort. It’s not one sided. The learner has to have a stake in the contract or else they won’t participate. Here is an example of a behaviour contract. Both the learner and the BCBA write and sign the behaviour contract. Behaviour contracts are a great ABA strategy for older learners.
Reinforcement makes a behaviour more likely to happen again in the future. There is positive and negative reinforcement. Many people get negative reinforcement and punishment confused. But, they’re not the same! In ABA terms, positive and negative don’t have the same meaning as in regular english. Usually, we assume something positive is good and something negative is bad. In ABA, positive means adding something and negative means removing something. So… positive reinforcement is adding something to the environment that makes a behaviour more likely to happen. Meanwhile, negative reinforcement is removing something from the environment that makes a behaviour more likely to happen. Some examples of positive reinforcement are: praise, a high five and extra time to play. Some examples of negative reinforcement are: being excused from the dinner table after eating a specific amount of food or turning off your loud alarm clock.
Some learners are visual, they learn by watching. Video modeling is showing the learner a video of people engaging in the behaviour. Video modeling can teach all kinds of behaviours. Social exchanges are a very popular video modeling topic. Video modeling is popular strategy outside of ABA also. Have you ever gone to YouTube to learn how to do something? That’s video modeling. One of the benefits of video modeling is that the learner can watch the video many times. They can stop it and rewind to review and ask questions. Video modeling is especially useful now, during the pandemic while in person instruction might not be possible.
One of the keys to ABA is breaking big behaviour chains down into smaller more manageable steps; this is task analysis. To do a task analysis you first need to identify the target behaviour. Once you know the target behaviour you identify each step in the behaviour chain. When you’re ready to teach, there are three processes you can use: forward chaining, backward chaining and whole chain. These processes determine how you will be prompting the learner when you’re teaching. For example, in a forward chain, you would teach the first step but prompt the rest. Alternatively, in a backward chain, you prompt each step except the last. As your learner masters the steps you move either forward or backward on the chain. In a whole chain approach, you’re looking at whether prompting each step is needed.
These are just 5 of the strategies that are common in ABA. There are many more. You can use any combination of these strategies. Each ABA program should be individualized and designed specifically for your learner. BCBAs are the people who are best trained to design ABA programs.
Have you ever been in a situation where the music was just too loud or the lights were way too bright? How about being in a place that was far too overcrowded and you started to feel overwhelmed and panicky? Well, this is a common feeling for those that are diagnosed with autism or Sensory Processing Disorder (SPD). SPD is related to over or under sensitivity to certain sensory stimulation such as loud noises, bright lights, tastes and touch.
It is a condition that affects the way the brain receives and responds to information concerning our senses and has been found to create either an over or under sensitivity to certain things within our environment. Those that have (children specifically for the purposes of this article) SPD often receive a co-occuring diagnosis like Autism Spectrum Disorder (ASD) or Attention Deficit Hyperactivity Disorder (ADHD).
Since SPD is so prominent in children especially for those that also have additional disorders, life can become difficult for not only the child but for the parents and caretakers as well. This sensory sensitivity can be very debilitating and sadly can turn a task as simple as going to the grocery store into a very difficult undertaking.
Here in the Greater Toronto Area (GTA) in Canada, some companies have caught on for the need to provide alternative accommodations for those that live with special needs like SPD, ASD & ADHD etc. These establishments have collaborated with autistic focussed organizations to find ways to modify their businesses to provide a sensory-friendly environment.
Below you will find some of the places around the GTA that are now offering these autism and sensory-friendly settings.
Autism or Sensory Friendly Attractions in Toronto
1. Ontario Science Centre – 770 Don Mills Road, Toronto, ON M3C 1T3The Ontario Science Centre offers Sensory-friendly Saturdays on the first Saturday of every month from 3 – 7 p.m. They have partnered with Geneva Centre for Autism and other organizations to offer sensory-friendly events and programs. Sensory-friendly Saturdays were created to provide an environment that is inclusive, respectful and accessible. Their program is available to everyone and is appropriate for all ages and abilities.
The following dates are set for 2020:
February 1, March 7, April 4, May 2, June 6, July 4, August 1, September 5, October 3, November 7 and December 5
2. Toronto Zoo – 361A Old Finch Avenue, Toronto, Ontario, M1B 5K7
The Toronto Zoo has developed a downloadable app specifically for those with ASD. This app called MagnusCards (for more information please visit http://torontozoo.magnuscards.com/) was created to provide a structured, step-by-step program that has a game-like design which helps teach a variety of life skills through the use of the app.
This app is believed to provide empowerment and a welcoming environment for those living with autism and other cognitive special needs. The five-card decks include information on entering the zoo, Indo-Malaya, Tundra Trek, African Rainforest Pavilion, and Getting Help.
For more information please visit their website at: http://www.torontozoo.com/tz/accessibility
3. Cineplex Movie Theatre – Variety of Locations
Cineplex theatres offer “Sensory Friendly Screenings”, which includes a “lights up and volume down” environment. In partnership with Autism Speaks Canada, Cineplex provides an atmosphere that allows those individuals with ASD or those who suffer from sensory sensitivities the opportunity to enjoy new releases at the theatre.
The website states that these screenings will take place approximately every 4 – 6 weeks on Saturday mornings at 10:30 AM, however it is best to check your local theatre in case any changes have taken place.
4. Royal Ontario Museum (ROM) – 100 Queen’s Park, Toronto ON, M5S 2C6
The ROM has teamed up with Autism Ontario to create a “ROM Sensory Friendly Guide”, where they provide helpful tips for visiting. The guide speaks on different areas in the museum that could affect someone with sensory issues (such as loud noises, lighting, scents, temperature, sloped floors and crowded areas). It also outlines where there are quiet areas around the museum.
For more information please visit their website at:
5. Ripley’s Aquarium of Canada – 288 Bremner Boulevard, Toronto, ON M5V 3L9, CANADA
Ripley’s Aquarium of Canada is the first autism certified attraction in Canada. This Certified Autism Center has been designated by the International Board of Credentialing and Continuing Education Standards (IBCCES) after completing comprehensive autism awareness and sensitivity training.
Ripley’s Aquarium is committed to ensuring that their visitors with ASD and other sensory sensitivities have the greatest time while at the attraction. The staff have undergone extensive training and each exhibit integrates some form of IBCCES sensory guidelines (https://www.ripleyaquariums.com/canada/files/2019/04/Sensory-Guides-Final.pdf) which provides the guests with additional information regarding the sensory impacts at each display or activity.
Please check out their website for dates and times as they will be hosting several additional sensory-friendly days that include quiet spaces, music-free environments and increased lighting.
6. Chuck E. Cheese – Various locations around the GTA
Chuck E. Cheese offers a sensory-friendly experience the first Sunday of every month at participating locations, this includes opening doors two-hours before their regular opening times. The organization realizes that the Chuck E. Cheese experience can be overstimulating and therefore wanted to provide an opportunity for those that suffer from sensory sensitivities to come out and have fun with well-trained staff. As it is their mission to provide an event that allows “ALL kids to be a kid”.
For more information please visit their website at:
Skyzone offers activities such as trampolining and jumping along with a wide variety of other programs. At Skyzone, visitors are provided with a fun experience that allows them to burn off energy in an extremely fun way. Skyzone offers sensory-friendly hours which provides a calmer, toned-down jumping experience for those with special needs.
For more information please visit their website at:
As mentioned, tasks for which most would think is simple such as grocery shopping can be an anxiety-ridden experience for both a child with ASD and their parent/caretaker. Grocery stores can have a lot of sensory stimuli such as loud music, bright lights and crowds which can be overwhelming for a child that suffers from sensory sensitivities.
Sobeys has taken notice of this issue and has now created an accessible and inclusive sensory-friendly shopping experience. To accommodate the sensory needs, Sobeys provides every week, a two-hour shopping window where they eliminate almost all the in-store lights and sounds.
Some of the sensory sensitivity measures taken by Sobeys are turning down the lights, turning off scanners, lowering music, having staff members speaking in softer tones and holding off on any announcements. According to Sobeys, the sensory sensitive shopping takes place currently on Wednesdays from 6 p.m. to 8 p.m. Please check with your local Sobeys for up to date information on dates and times.
For more information please visit their website at:
9. Young Peoples Theatre – 165 Front Street East, Toronto M5A 3Z4
Young Peoples Theatre offers “relaxed performances” where the performances are the same however there is a more relaxed atmosphere relating to noise levels and movement. The sensory sensitive measures include the house lights being adjusted so that they are not as dark as they normally would be. They have also created designated relief areas where you can go if a break is needed. For the ease of your child’s visit the theatre has also created a visual visiting guide that can be looked over with your child prior to your arrival to help eliminate any fears or surprises that could arise.
10. Upper Canada Village – 13740 County Road 2,Morrisburg, Ontario
Upper Canada Village is nestled up in Morrisburg Ontario and offers visitors an exciting experience of what life was like back in the 1860s. Through transporting back in time, visitors are able to explore authentic buildings, activities and the people of the time. Upper Canada Village offers ASD sensory-friendly Sunday mornings where a child with sensory sensitivities will be able to enjoy the attractions is a less chaotic and overwhelming environment. They provide some helpful tips on their website for visiting the village with a sensory sensitive child.
For more information please visit their website at:
Enjoying fun and memorable experiences is so important for children and even though your child may suffer from sensory sensitivities it is comforting to know that particular companies are working towards creating inclusive and accessible environments for ALL children to feel welcome and be able to enjoy their time.
World Autism Awareness Day is today, which means it’s a great time to contribute to the Giant Autism Billboard (see it here). It’s a thought-provoking project centred around the importance of autism awareness, and it stems from the belief that the sharing of lived experiences is a great way to help others gain a better understanding of neurodiversity.
The Giant Autism Billboard, an online collaboration that invites autistic people of all ages as well as their family members, caretakers, and doctors to condense their life experience and advice about autism into one pearl of wisdom to share with the world, the idea, thought, or message they most feel represents their experience. Finding a way to distill life with neurodiversity into one statement is no mean feat, but it has inspired many voices throughout the autism community to offer their unique input.
Autism Awareness Day is only a starting point
The large collaborative project serves to illustrate an idea that’s central to autism awareness, which is that no two neurodiverse people are alike and no one’s experience with autism is exactly the same. This helps to create an understanding of autism as a spectrum of behavioural differences which are experienced uniquely, defying negative stereotypes and embracing the idea that neurodiversity can bring skills in addition to challenges. The project celebrates the voices of those affected, acknowledging that they are most able to provide true autism awareness and amplifying their voices to contribute to the cause.
The Giant Autism Billboard will be featured on the We The Parents website during the month of April, which has been designated as World Autism Awareness month. The site was founded in 2017 by parents Neve and Keane as a welcoming, judgement-free resource which parents can look to for advice, and takes special interest in supporting families affected by autism.
I have contributed and I hope that you will as well.