Monthly Archives: October 2022

Autistic Mothers

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Autistic mothers

As clinicians, we work with families that have one or several autistic children and we have increasingly been able to recognise the subtle characteristics of autism in the profile of abilities of either or both parents. Considerable research has been conducted on autistic fathers but relatively less on autistic mothers. As we explore how autism can be effectively camouflaged by autistic women, we are now more able to identify autism in a mother who may also identify with the abilities and experiences of her autistic child and seek her own diagnostic assessment.

We will combine our extensive clinical experience in supporting autistic mothers with recent research studies to outline the challenges and benefits of being an autistic mother.

Challenges of being an autistic mother

The challenges are based on the core characteristics of autism, namely social abilities and sensory experiences, emotion regulation, communication with a range of agencies and services and self-confidence.

The social demands of being an autistic mother can include attending school and after-school activities, congregating with other parents, for example at the school gate or at a party, supervising play dates and creating social opportunities for their child or children. There can also be concerns regarding a tendency to be very direct and inadvertently offend other mothers. The autistic mother can find the many social experiences very stressful and exhausting, and, being sensitive, can pick up on the sense that she is not connecting with others in the way she would like to, leading to many hours of distress after socialising, analysing what happened and wondering how to experience a different outcome.

Sensory sensitivity can be a challenge in terms of the sudden sharp noises of a child shrieking, coping with the noise and chaos in the home caused by various family members, tactile sensitivity to toddlers climbing on you and the aroma of bodily fluids and substances.

There is also the difficulty of suppressing one’s own emotions when managing a child’s emotions, responding to a young child’s frequent need for affection and touch and ensuring each child receives enough affection from the child’s perspective. Having children can also reduce an autistic mother’s access to emotion recovery mechanisms such as solitude, creative activities, exercise, and engaging in a hobby or interest. There is also coping with the frustration of children interrupting activities and thoughts and children needing attention, conflict resolution and entertainment preventing the achievement of household responsibilities. There are many legitimate reasons for autistic mothers to feel exhausted and depressed.

A mother is often expected to liaise with various government agencies and services, especially if a child is autistic. We have found that autistic mothers can have difficulty communicating with professionals about their children and often feel they are misunderstood, isolated and unfairly evaluated by professionals and other parents. This can lead to extra scrutiny from child welfare agencies and not knowing whom to turn to for compassion and support.

We have found that autistic mothers are prone to lack confidence in their maternal abilities, being unsure if they can rely on intuition. There can also be a sense of perfectionism and self-criticism. There can be challenges in providing their child with guidance in social abilities due to their recognition of having been delayed in acquiring social and friendship skills. However, we have found a great motivation to learn parenting skills, often from literature and the Internet.

Research studies

 In 2021 there were three studies published that explored the abilities and experiences of autistic mothers. These studies have confirmed many of our clinical observations. A study of 355 autistic mothers noted their perception of motherhood as an isolating experience, feeling that their parenting was being judged and having difficulty asking for support when they needed it (Pohl et al 2021). The same study confirmed difficulties with multi-tasking demands of parenting and domestic responsibilities. The study had a control group of non-autistic mothers, and the autistic mothers were more likely to report they were not coping. Autistic mothers also reported a high rate of post-natal depression (60%). However, 85% of autistic mothers reported that motherhood was rewarding to them.

A study of 20 autistic mothers which included 20 matched non-autistic mothers found that both groups expressed equally high levels of parenting stress and no significant differences between the groups in understanding their child’s strengths, abilities and needs and helping the child learn and develop (Adams et al 2021).

A detailed study using semi-structured interviews of 9 autistic mothers with at least one autistic child identified four subordinate themes (Dugdale et al 2021). The first theme confirmed that autism impacts parenting with distinct strengths and difficulties. A shared diagnosis and similarities created a ‘special bond’ with more depth and instinctive understanding of their autistic child’s needs, as illustrated in this quotation from a research participant I’m the one who can get through to him.

They felt they were better able to translate difficulties and mediate conflicts. They also expressed that they struggled to socialize with other parents and manage sensory sensitivities while parenting. There was the added dimension of feeling guilty that they had passed on something possibly genetic.

The second theme was a battle to achieve the right support. They often felt misunderstood, judged, and dismissed. Professionals assumed they were aggressive and did not appear to take their concerns seriously. One autistic mother said people really need to listen to autistic parents… we’re not thick, we see things from a different perspective. The mothers did find greater acceptance from professionals that understood autism. They also sought support from their non-autistic partner to accommodate aspects of parenting they found difficult as in the quotation …he was able to do the make-believe stuff that I couldn’t do.

All participants achieved recognition of being autistic after becoming a parent and the third theme was the effects of having a diagnosis which led to a re-processing of participants’ experiences in a positive way. An example was coping with change and cognitive flexibility which they had struggled with, and the diagnosis helped them become more understanding and accepting of this characteristic of autism. The fourth theme was the ups and downs of parenting with the downs including not fitting into the normal mum’s club and coping with tactile and auditory sensory sensitivity. However, the ups were a sense of intense connection, enjoyment, and rewards. 

Benefits of being an autistic mother

Our clinical experience is that there are many benefits to being an autistic mother. These include creating a home environment where neurodiversity is accepted and admired, as well as encouraging knowledge, creativity, and originality in problem-solving. There is empathy for being bullied, teased, socially rejected and humiliated and a determination to prevent their autistic child from having those experiences.

Autistic mothers ensure there is consistency and routine in daily activities and expectations. There is a preference for logic rather than obedience and seeking opportunities to boost their autistic child’s self-confidence. Autistic mothers can easily explain their autistic child’s social and sensory perception to peers and teachers and encourage an understanding and acceptance of autism that may not have been experienced in their childhood.

Resources and references

We recommend the book Spectrum Women: Autism and Parenting by Renata Jurkevythz, Maura Campbell and Lisa Morgan published in 2020 by Jessica Kingsley Publishers www.jkp.com

Adams et al (2021) Autism in Adulthood 3

Dugdale et al (2021) Autism 25, 1973-1984

Pohl et al (2021) Molecular Autism 11:3

How to create an autism-friendly home

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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.