How to create and autism-friendly home

Introduction

As parents get to know the profile of abilities and daily challenges of their autistic child, they make accommodations at home to create an autism-friendly environment. The central characteristics of autism include sensory sensitivity, need for times of solitude, social communication difficulties, engagement in a special interest and difficulty coping with change. Parents know that situations that are enjoyable for typical children can be stressful for an autistic child, such as having visitors to the home and making spontaneous decisions about activities for the day. There is also the likelihood of an autistic child having high levels of anxiety and being sensitive to the ‘emotional atmosphere at home. We will explore each of these characteristics of autism to affirm why the home of an autistic child may at times be different to the home of a non-autistic child.

Sensory sensitivity

Some sensory experiences are perceived as excruciatingly painful by autistic children. This can include sudden or ‘sharp’ noises such as a dog barking, the sound of electrical appliances, the type and intensity of natural and artificial lighting, tactile experiences such as seems and labels in clothing, the taste of some foods and the smell of cleaning products. Parents soon know which sensory experiences are aversive and recognise that for example, if their autistic child cannot tolerate the sound of a vacuum cleaner, to do the vacuuming when the child is at school or out of the house. They may also become aware of how auditory experiences during the night can cause an autistic child to wake up and adjust the child’s meals to accommodate sensory sensitivity associated with food. An occupational therapist may be able to provide advice on sensory sensitivity and adjustments that are needed at home.

Social experiences

Autistic children can enjoy social experiences, but social engagement is achieved through intellectual rather than intuitive abilities. Consequently, socialising with family members and visitors to the home can be mentally and emotionally exhausting. Parents may recognise when their autistic child needs to recover in solitude emotionally and cognitively, perhaps spending time alone in their bedroom or the garden. An autistic child may need guidance in reading social cues and knowing social conventions such as the different types of greetings according to the position of the visitor within the family and cultural expectations. For many autistic children, ‘two are company, three a crowd’ so there may need to be adjustments regarding the number of people in the room or home. Large family gatherings and sibling parties may need careful preparation and monitoring according to the ability and stress level of an autistic child. Parents will need to explain their autistic child’s challenges in social situations to those visiting the home.

Special interest

One of the characteristics of autism is an interest that is unusual in intensity or focus. The interest has many functions including a sense of emotional and intellectual enjoyment, a thought blocker for anxious or sad thoughts, an energiser when energy is depleted, such as when returning home from school and a means of making friends with those who share the same interest. The difficulty for parents is determining what is a reasonable amount of time to engage in the interest. There will need to be a compromise and an autistic child knowing and accepting when and for how long they can engage in their special interest.

Coping with change

Autistic children feel calmer when they experience routines and predictability in the daily schedule of experiences and expectations at home. There can be extreme distress when there are even small changes to their expectations. They have a ‘plan for the day’ and can have difficulty conceptualizing an alternative plan. It is inevitable that there will be unexpected changes in daily routines at home and parents will need to provide advanced information on what will change and why and help the child create a ‘plan B’.  Having too many changes in the day will increase stress levels which could result in an emotional meltdown. Parents tend to manage by planning fewer activities, using visual schedules, and giving advance notice of upcoming changes.

Coping with anxiety

Autism is associated with high levels of anxiety. Unfortunately, due to difficulties with interoception (perceiving internal body signals such as breathing and heart rate) and alexithymia (describing thoughts and feelings in words) an increase in anxiety levels may not be recognised and communicated by an autistic child. However, parents may gradually determine the signs and situations associated with anxiety. In the home environment, they will need to be aware of situations likely to increase anxiety such as specific sensory experiences, change and the unexpected, social expectations and fear of making a mistake. They recognise the child’s fight, flight or freeze reactions to high levels of anxiety and the tendency to refuse to comply with requests when anxious or needing reassurance and the completion of routines and rituals to alleviate their anxiety.

Parents will become aware of strategies to reduce their autistic child’s anxiety by providing reassurance, and information and being calm themselves. They may need advice from a psychologist and paediatrician on the range of activities and treatments available for anxious autistic children. This can include Cognitive Behaviour Therapy which may include meditation, mindfulness, and yoga that can be conducted at home. A paediatrician may consider medication to treat high levels of anxiety.

Managing a meltdown

Sensory, social, and emotional experiences can increase to a level where there is an emotional meltdown. Parents may have experienced an autistic child’s propensity for meltdowns since they were toddlers. There are two types of meltdowns that can occur at home, an explosion of emotional energy that is fuelled by frustration and anger or an implosion of emotional energy that is an expression of intense despair and the potential for self-harm. Parents will learn that during a meltdown they need to inhibit their own distress and be calm and reassuring, affirming, and validating the child’s intensity of emotions and explaining that the intense feelings will eventually go away.

It is also important not to ‘interrogate’ their autistic child as to why they are so angry or distressed.  In such an emotional state they will have difficulty giving a coherent and sequential explanation of why they are agitated. As an autistic child said: When I’m upset, the last thing I want to do is talk to someone. Parents will also learn that a focus on punishment and consequences during a meltdown will not be effective as explained by an autistic child who said: I can hear but my brain can’t process what people say.  After the meltdown parents can explore with the child what happened to create such intense distress and create with the child, a plan to manage similar situations in the future.

Experiencing and expressing affection

An emotion repair mechanism that is very effective for typical children is affection, but affection may not be as effective for autistic children. As an autistic adolescent said: Human comfort has always been a mystery. Parents soon learn to adjust their level of affection as an expression of love and reassurance to a level that is comforting and enjoyable for an autistic child. The level would probably be perceived as insufficient for a typical child but just right for an autistic child. Parents also come to accept that the autistic child’s own expression of love for them may not be at the level of expression they would like to experience. This is due to being autistic not an absence of feelings of love for a parent.

Emotional empathy and sensitivity

A characteristic of autism that we are increasingly recognising is an ability to perceive, absorb and amplify within themselves, negative emotions in others and a difficulty resonating with euphoria being experienced by other family members. A parent may be feeling anxious, agitated, or distressed (perhaps for reasons that have nothing to do with their autistic child) and try to suppress and inhibit their feelings. However, an autistic child can have a ‘sixth sense’ ability to recognise such feelings in others and be distressed themselves and not know either how to separate their own feelings from their parent’s feelings or what to do to repair their parent’s feelings. When parents are aware that this is happening, it is important to suggest to their autistic child what to do practically or emotionally (such as a quick hug) to make a parent feel better.

When there is a joyful family celebration, an autistic child may not be able to resonate with the euphoria of others and seek solitude or everyone return to a subdued emotional state. While parents may be aware of this characteristic of autism, it may need to be explained to visiting family members or family friends.

Social debriefing

Making and keeping friends can be difficult for autistic children and they are vulnerable to bullying, teasing and rejection by their peers. One of the roles of the parent of an autistic child is to provide an opportunity for a social and emotional debrief after school and to explain the intentions of peers and the development of a friendship network.

Coordinating support services

Parents of autistic children often benefit from a multi-disciplinary support team that provides advice on improving abilities and emotion and behaviour management at home and at school. Parents will need to coordinate information and strategies between their support team, teachers, and extended family. This will require the allocation of time for this role.

Daily living skills

Due to difficulties with motor coordination, attention, and planning, the parent of an autistic child will need to allocate more time than for a typical child to encourage daily living skills from learning to tie shoelaces to domestic chores. An autistic child is typically very dependent on external prompts as reminders to complete certain tasks. They also struggle to see “the point” of why they should engage in certain activities, such as household chores or tasks to attend to personal hygiene, because they personally do not care if their room is dirty, or they smell. Reasons for why we engage in these tasks need to be presented with calm and logic.

Summary

Creating an autism-friendly home will require adjustments to family routines and expectations and for parents to spend more time on a range of activities than would be expected with a typical child.  Making changes to both our expectations and the home environment, such as those changes described above, will ultimately decrease the background stress for your autistic child, and thus for the whole family.