5 Things Every Parent Should Know When Raising an Autistic Child

Parenting an autistic child can feel overwhelming at times. Parents want to do their best for their children, but it can be hard to sort out what should be prioritized over something else. You can’t do it all – so what should you focus on? My two autistic children are now adults, and I can look back over the years and see what were the most important things to concentrate on that made the difference in our lives. I realize this may not be everyone’s list, but I think these topics give a good foundation on which to build and provide support throughout a person’s lifespan.

In everything that I do, I keep at the forefront of my mind autistic neurology. The autistic brain thinks in an absolute way rather than a relative way. My Belgian colleague, Peter Vermeulen, explains this well in his blog Tennis, the predictive mind and autism. American psychologist Dr. Ross Greene says, “Children do well if they can.” If they can’t, they may be missing a prerequisite skill, not know how to start the task, don’t understand the language, or don’t see the steps in the task.

Some other things to also think about:

• No autistic person will present the same way as each is an individual.
• Information is changing all of the time so don’t beat yourself up for things you did in the past.
• Be prepared to let go of assumptions or things that don’t work.
• One strategy doesn’t fit all nor will it work every time.
• It can take time for something to work.
• You may not see the fruits of your labor right away, but you are building a foundation.
• Success is often small.
• Expect developmental plateaus. If you plot development on a graph, it will look jagged.
• Be able to adapt as needs and situations change.
• It’s all about relationships, respect and trust. Without these, a person can’t experience happiness and well-being.

Focus on Strengths

So often, an autistic person is described in terms of what they can’t do or where they place among their non-autistic peers. Try to reframe this by thinking about a person’s strengths and the positive qualities of autism. Some of these can be:

• Visual learners rather than auditory learners
• Excellent long-term memory
• Detail focused which can transfer into in-depth knowledge way beyond the school curriculum
• They are kinesthetic learners and learn by doing
• Integrity – honest, loyal and committed
• Approach things methodically –  thought processes are analytical; can spot patterns and repetitions
• Deep Focus – concentration level can be very focused, allowing for freedom from distraction

The 5 Things Every Parent Should Know

1.  The Need for Predictability

Why is predictability so important? It is because predictability:

• lessens anxiety.
• reduces the fear over changes in the day or routine.
• helps with transitions (25% of the school day involves transitions).
• provides a clear beginning, middle and end to an event/activity.
• supports independence.
• supports communication.

Remember – the autistic brain thinks in an absolute way rather than a relative one so having a predictable environment and day will help a person feel calmer and function better. This is true for most people! Novelty and constant change are stressful as they require adaptation, thinking and planning.

Predictability is created by using visual supports, having established routines, breaking down the steps to a task, and having a structured environment and activities.

2. Use Visual Supports

Visual information is fixed and permanent, providing consistency and predictability. While the types of visual supports  may change as a person matures, the need for them will always be there. The adults who are providing support also communicate more clearly when using visuals.

We use visual supports because:

• autistic people are stronger visual than auditory learners.
• they provide predictability/consistency which lessens anxiety.
• improve understanding.
• provide structure and routine.
• build confidence.
• provide opportunities for interaction.

Visual supports take a variety of forms such as:

• tactile symbols/objects of reference
• photographs
• short videos
• miniatures of real objects
• coloured pictures
• line drawings
• symbols
• written words

Use visuals to create schedules that can be daily, weekly or monthly. You can use visual schedules to teach the skill of making a choice like what to do during recess. I used visual schedules to teach flexibility by adding the word “surprise” occasionally to show my children that unpredictable things can happen and it isn’t necessarily a bad thing. Schedules can be a great way to show the passage of time throughout the day. When a task/activity has passed, take it off the schedule and put it in an envelope, signaling that the time has passed and the task is over. You can also see what’s going to happen next which lessens anxiety by creating predictability. Visual schedules create greater independence because a person can see structure, knows the expectations, and can see what to do next.

As the late Barbara Bloomfield, SLP, said, “True independence implies being able to set up visual supports of your own as you need them. Making lists, keeping track of appointments and visually organizing one’s living spaces and possessions are all self-prompting strategies that can be taught in small steps beginning at the pre-school level.”

3. Understanding and Supporting Sensory Needs

Dr. Jean Ayres, occupational therapist, first identified sensory processing difficulties in the 1970’s. Sensory processing involves 7 sensory systems. Dr. Ayres added two additional internal senses to the traditional 5 of hearing, sight, touch, taste and smell – proprioception (body awareness) and vestibular (movement/balance). More recently added to this list is interoception – the 8th sensory system.

A person may be over- or under-responsive to sensory input; activity level may be either unusually high or unusually low; a person may be in constant motion or tire easily. Some people may fluctuate between these extremes. When sensory systems are regulated, a person will feel calm, in control, and able to interpret sensory stimuli. When sensory systems get overloaded and out of balance, behaviors of concern may happen. A person may feel overwhelmed, distracted, impulsive, show signs of distress, become aggressive, withdraw or shut down.

Every autistic person will have a unique sensory profile so there is no one size fits all solution to helping with sensory processing difficulties. Observational checklists can be used to gather information about a person’s sensory profile. Sensory checklists will provide the framework for recognizing when sensory processing difficulties are occurring.

Once a sensory profile is known, a sensory diet can be created. This is an individualized plan of physical activities and accommodations to help a person meet their sensory needs. This plan provides the sensory input needed to stay focused and organized throughout the day. It can also be used to help with recovery after overload and plays an integral part in calming strategies.

There are many activities that can help with sensory regulation which support a child’s development. Gardening, making toys, outdoor play, physical movement, performing household chores, and practicing yoga can address and fulfill sensory needs.

Engaging individuals in sensory experiences on a regular schedule can support focus, attentiveness, and interaction. A person may feel less anxious when they feel comfortable and in control. Alone-time is also necessary for recovery, reducing overload, and supporting wellbeing. The world can be a busy, confusing, and overwhelming place. Time to retreat will leave an autistic person better able to focus, learn, engage, and regulate.

4. Understanding and Building Interoceptive Awareness

Learning about interoception from OT Kelly Mahler completely changed my understanding of my children and why things like not knowing if they are thirsty or need to go to the bathroom happened. I used to think it was a failing on my part…but then I heard about interoception. The ability to recognize, understand and interpret emotions and feelings comes through the sensory system’s eighth sense – interoception. It is the foundation from where all other senses are processed and helps us to regulate the body’s needs.

What exactly is interoception? Muscles and joints have receptors that tell you where your body parts are. Interoception works much the same way, but the receptors are in your organs including your skin. These receptors send messages about the body to the brain, helping to regulate vital functions such as hunger, thirst, digestion, or heart rate.

Understanding these bodily feelings can help with interpretation of what’s going on inside the body. If your bladder is full, you need to urinate. If your heart is beating fast, you may be anxious and need to take a few deep breathes to slow it down.

Interoception also affects the interpretation of emotions. Emotions may not be “felt”. If you can’t tune in to the body cues that help interpret emotion, it is harder to identify the emotion. It’s important to understand this aspect, because not feeling emotions affects a person’s behavior. For example, a person may not recognize fear because they don’t perceive that tense muscles, shallow breathing and a racing heart mean fear. Interoceptive challenges also affect the ability to self-regulate. Self-regulation is the ability to manage our emotions.

5. Taking Care of the Caregiver

When my children were young, I never thought about my own needs nor did I think they were important until I had a nervous breakdown. While taking care of others we have to take care of ourselves too, otherwise we burn out. When taking a flight, we are always told to put our own oxygen mask on first before helping others.

I found it has helped to accept what I can’t control such as:

• my children’s development.
• hitting developmental plateaus.
• the attitude of others towards my children.
• how others react to my children.
• predicting what will happen next.
• things unfolding exactly as I planned.

I try and focus on the things that I can control:

• eating healthy, taking care of myself.
• exercising to help manage stress and anxiety.
• finding interesting and fun things to do for myself such as figure skating.
• treating myself to little things – flowers, coffee, a bubble bath, a good book.
• my attitude and response.
• my kindness towards others.

Positive thinking and actions can go a long way in support mental health. Think about:

• having things to look forward to.
• keeping connected with people.
• moving a little everyday.
• spending a little time outdoors.
• finding a space for yourself to retreat to even if it is just for a few minutes.
• developing your own interests and passions.

Knowing these 5 things has been enormously helpful to me and has allowed me to move beyond just surviving each day. While it took time to learn about these topics and develop materials and strategies around them, the effort was worth it to have my children experience success in adulthood. They are happy and healthy people, enjoying activities that support their interests. Our lives are always evolving and changing, but I feel confident that I have the tools and ability to go with the flow and face new challenges.