Tips on Supporting an Autistic Child Through Cancer Treatment

By Ethan Blake 10 min read

How to help your autistic child navigate cancer treatment

Introduction: Understanding Autism and Cancer

Autism, also known as Autism Spectrum Disorder (ASD), is a developmental disorder that affects communication and behavior. Individuals with autism may have difficulty understanding social cues, may engage in repetitive behaviors, and can be incredibly sensitive to changes in their environment.

On the other hand, cancer is a disease characterized by the uncontrolled growth of abnormal cells in any part of the body. It can occur at any age and may require intensive medical treatments such as chemotherapy, radiation therapy, or surgery.

When a child with autism is diagnosed with cancer, it can be a challenging period for both the child and the parents. The unfamiliar medical environment, an invasion of personal space during medical procedures, and changes in daily routine can all cause stress and anxiety for your autistic child.

A story comes to mind about a boy named Liam who has Autism Spectrum Disorder and was diagnosed with leukemia at the age of six. His mother used a variety of strategies to help him understand his diagnosis and navigate his treatment journey. Let us learn from their experience.

Liam’s mom created a visual schedule detailing what would happen each day, including doctor appointments and medications, to help him prepare for the changes.
She always explained the upcoming procedures using simple terms that Liam could understand.
To help him cope with invasive procedures, she brought familiar items from home that comforted Liam like his favorite plush toy.
She encouraged him to express his feelings through art, his preferred method of communication.
Liam’s mom advocated for her son’s needs to the medical team, making sure they were aware of his sensitivities and needs related to his autism.
She sought support from professionals who are experienced in dealing with autistic children going through medical situations, such as child life specialists and psychologists.

Facilitating Communication

Effective communication is crucial in helping your autistic child understand their cancer diagnosis and treatment. As a parent or caregiver, you need to explain the situation and procedures using an accessible language that suits your child’s comprehension level.

Next, incorporate visual aids wherever possible. Children with autism are often visual learners who understand better through images, diagrams or animations. Picture boards, storybooks on medical checkups or treatments can be extremely helpful.

Advocate for your child when interacting with healthcare professionals. Ensure they have knowledge about autism and the special considerations needed to ensure your child’s comfort during medical appointments.

Let’s consider Liam’s mother again. She consistently prioritized open communication with him. For instance:

She used simple and clear language whenever she had to explain medical concepts to Liam.
Visual aids like picture books about going to the doctor were hugely beneficial in preparing him for hospital visits.
Liam’s mother made sure to continually advocate for her son’s needs and individual characteristics related to his autism diagnosis while communicating with the healthcare team.
She asked for patience from the healthcare professionals in handling Liam, especially during stressful procedures.
In critical situations, she sought assistance from a child’s life specialist to facilitate effective communication between Liam and the medical staff.
Finally, she committed to regular dialogue with Liam about his feelings and experiences throughout the cancer treatment journey, promoting emotional understanding.

[Insert summary table here]

Maintaining Routine

Children with autism usually depend highly on predictability and routine. A cancer diagnosis disrupts these routines which could be challenging for a child on the spectrum.

Strive to maintain some semblance of normality amidst the chaos of cancer treatment. This could mean adhering to familiar structures like mealtimes and bedtime.

Modify the routine as necessary to incorporate new elements e.g. doctor’s appointments or treatment schedules. But always prepare your child in advance for these changes so that they don’t come as a sudden shock.

Imagine the way Liam’s mother managed the upheaval in their daily routines:

Throughout cancer treatment, she tried as much as possible to keep Liam’s regular schedule of meal times, school, and playtime intact.
She made gradual alterations to Liam’s routine to factor in hospital visits and medication times, helping him adjust smoothly rather than abruptly.
The visual schedule mentioned earlier was critical. She used it to help Liam predict upcoming activities within his daily routine and gain a sense of control.
Before significant changes occurred, she prepared Liam with ample time, minimizing anxiety and stress.
She also added extra comforting activities into the routine before and after distressing treatments, such as watching a favorite cartoon or snack time.
In cases where maintaining the routine was not possible due to medical reasons, she reassured Liam about the temporary nature of this disruption, promising a return to the usual once he feels better.

[Insert summary table here]

Providing Sensory Support

Autistic children often have unique sensory experiences. Some may be hypersensitive (over-sensitive) to certain stimuli, while others might be hyposensitive (under-sensitive). When dealing with cancer treatments such as CT scans, chemotherapy or surgery, your child may encounter various discomforts or sensory challenges.

Start by understanding your child’s specific sensory needs and preferences. Observe their reactions to different stimuli and note what triggers sensory overload.

Once you have gathered this information, use it to anticipate and prevent uncomfortable sensory experiences, especially during hospital visits.

For instance, Liam also experienced sensory sensitivities:

Liam’s mom noticed he was particularly sensitive to bright lights typical in medical settings, so she started bringing along Liam’s favorite sunglasses for him to wear during appointments.
She noticed that he loved the sensation of heavy blankets. So, she got him a weighted vest that he used especially when anxious or upset, often calming him down effectively.
Knowing his aversion to loud noises, she provided noise-cancelling headphones during noisy procedures or in crowded waiting rooms.
To prepare him for feeling cold during certain medical tests, she carried warm blankets with familiar smells to help him cope better.
In situations where she anticipated discomfort — such as a needle prick – she tried sensory distraction techniques like focusing his attention on an interesting toy.
She worked closely with the treatment team to ensure they were aware of and considerate about his sensory sensitivities.

[Insert summary table here]

Managing Anxiety and Stress

Cancer treatment can be a stressful experience, even more so for an autistic child. Fear of the unknown, physical discomfort and the unfamiliarity of hospitals can cause significant stress.

Be proactive in identifying and managing anxiety and stress triggers. Consciously strive to create a calm environment and provide reassurance to help your child feel safe and secure.

Refer to calming strategies that have worked in the past or explore new ones that might suit your child better now considering their current situation.

Here are the steps Liam’s mother took to manage his anxiety and stress:

She kept a vigilant eye on signs of increased anxiety or stress in Liam, which often presented as increased restlessness or withdrawal.
Upon noticing these signs, she would employ known calming strategies such as deep-breathing exercises, listening to soothing music, or painting, which calmed Liam effectively.
One strategy involved carrying a comforting object (his favorite toy) to provide physical comfort and mental assurance during medical procedures.
She used visual aids like social stories and calming pictures to help alleviate his fear of certain hospital procedures
Liam’s mom consistently reassured him about the presence and support of family members and familiar people in his life, reinforcing feelings of safety and security.
When needed, she consulted mental health professionals who could guide her with additional strategies for managing anxiety and stress specific to their situation.

[Insert summary table here]

Navigating Social Interactions

Navigating social interactions with medical staff and other cancer patients can be challenging for children on the autism spectrum. Being aware of your child’s unique social cues is essential.

Make the medical team aware of your autistic child’s non-verbal cues or particular styles of interaction. Facilitate opportunities for social interaction at a level comfortable for the child, but don’t push them beyond their comfort zone.

Take note of practices that have proven successful in enhancing your child’s social skills and employ those strategies as much as possible.

In Liam’s case:

Liam’s mother ensured that the medical team was aware of and understood Liam’s unique social cues and behavior patterns.
She took steps to ensure that Liam had random periods of quiet time built into his day while in the hospital to avoid social overload.
Before social interactions were expected, such as group play sessions or social events in the hospital, she prepared Liam well in advance with clearly explained what would happen, who he would meet, and how he might interact.
She carried some of Liam’s favorite books which not only served as a comforting activity for Liam but also helped initiate conversations with others about common interests.
She promoted engagement in structured social activities that matched Liam’s interests, such as art therapy groups or music classes offered in the hospital.
Lastly, she respected and validated Liam’s need for solo-time, understanding that everyone has their unique social energy reserve.

[Insert summary table here]

Considering Alternative Therapies

Standard activities and therapies that aim to enhance comfort and well-being can be extremely useful. These are complementary to cancer treatments rather than substitutes.

Meditation, yoga, music therapy or art therapy might help your child relax and communicate their feelings better. Additionally, pet therapy with animals like dogs or cats could have a calming effect on your child.

Remember to collaborate with healthcare providers when incorporating any alternative therapies into your child’s routine to ensure safety and compatibility with ongoing cancer treatments.

Let’s explore what Liam’s mother did:

Liam’s mother learned about the option of music therapy through the hospital’s wellness program. She found out that Liam became calm and relaxed during these sessions.
She also arranged art therapy classes for Liam, as he had always communicated feelings better through drawing and painting.
To improve relaxation and sleep, she tried teaching simple meditation techniques suitable for children.
Knowing Liam’s love for animals, she requested visits from the hospital’s pet-therapy dog whenever possible, which brought joy and comfort to him.
Before initiating any new wellness practice, she made sure to discuss the idea with the medical team managing Liam’s cancer treatment to ensure there were no contraindications.
Always committed to exploring any safe additional support technique, she kept an open mind about potential benefits and observed how Liam responded to each activity.

[Insert summary table here]

Promoting Self-expression

Autistic children may struggle to express their emotions verbally. Encourage alternative forms of expression, like painting, music, or physical movements.

Allow ample opportunities for self-expression and validate your child’s feelings. This will help them vent out their feelings about the illness, strengthen emotional resilience and decrease stress.

Patiently listen when your child attempts to communicate in whatever style suits them best, showing acceptance and understanding.

For Liam, self-expression came in particular ways:

Drawing and painting were integral to how Liam processed his experiences. His mother incorporated ample opportunities for these artsy engagement during hospital visits and at home.
Recognizing that movement was another way he expressed his feelings, she encouraged small walks within the hospital premises as well as simple dance sessions at appropriate times.
When he tried expressing himself verbally, even if it seemed unclear, she patiently listened and showed interest, aiming to grasp his sentiments without discouraging him.
She made a habit of acknowledging and validating Liam’s feelings, whether they were voiced or expressed through actions.
Whenever possible, she associated his favorite music with different moods, whether he was anxious, tired, or happy, thus making it another means of non-verbal communication.
To facilitate better communication with the medical team, she shared her observations about Liam’s unique expressions, helping them understand his actions better.

[Insert summary table here]

Seeking Professional Help and Support Groups

Finally, don’t overlook the value of professional help. Child life specialists, therapists, or counselors with expertise in working with autistic children can provide valuable support.

They might offer helpful techniques to improve your child’s coping abilities, suggest ways to prepare your child for medical procedures, or advise on easing the transition between home and the hospital.

Moreover, joining support groups comprising parents walking a similar path, both online and offline, can provide comfort and practical tips.

For instance, Liam’s mother sought professional assistance in several ways:

Early on, she engaged a child life specialist who provided age-appropriate explanations to Liam about his illness and strategies to deal with difficult hospital procedures.
As Liam was familiar with an occupational therapist from school, the mom included them in the treatment journey for support during this challenging time.
If feelings of distress escalated beyond her control, she did not hesitate to consult a psychologist for professional advice on managing Liam’s mental health.
Liam’s mother found solace and useful advice by joining online parent communities where experiences about handling autistic children undergoing cancer treatment were shared.
She also attended local support groups and activities, providing Liam a chance to meet peers facing similar situations, thereby reducing fee000lings of isolation.
Reading books and articles authored by professionals experienced in dealing with autism and concurrent illnesses was yet another source of guidance for her.

[Insert summary table here]

Conclusion

In conclusion, navigating cancer treatment for an autistic child demands immense strength, patience, and resilience. Every child is unique, and there’s no ‘one size fits all’ strategy. However, these key themes could guide parents and caregivers to customize their approach based on their child’s needs and preferences.

Remember to consistently practice open communication, maintain routine, strive to understand sensory needs, manage anxiety, facilitate social interaction, promote self-expression, explore alternative therapies, and seek professional help when necessary.

And finally, remember that self-care for caregivers is essential too. You need to ensure you’re emotionally and physically well to help your autistic child sail through this tough journey.

[Insert summary table here]