My brother’s lazy parenting style is having a negative impact on his autistic son. It upsets me

Second, he eats only about three to four core foods, most of which are ultra-processed. They travel with these foods to accommodate him. He doesn’t sit at meals nor is he able to go out to them unless he has the iPad. My brother jokes that he is strong-willed, whereas I see him being utterly spoilt and with no limits, and think that this won’t help him ultimately. We usually have short periods of time together but when we go on holiday for a proper amount of time, as we will this month, I find it increasingly depressing. I’d really like some advice.
Greta

A. You are clearly concerned that your nephew, who has an autism spectrum condition (ASC), is not being parented in the right way. You feel that he was breastfed for too long, toilet-trained too late, is on his iPad too much and shouldn’t be sleeping with his parents. Clearly you feel that your brother and his wife are lacking in boundaries and overindulgent, leaving their son to be “utterly spoilt”.

While I understand that your concerns come from a good place, when I read your letter the saying “before you judge a person, walk a mile in their shoes” came to mind. Yes, it is not healthy for a child to spend hours on their screens and eat a diet only made up of three ultra-processed foods, but there are a number of other issues that need to be considered before being critical of their parents.

An ASC is a lifelong neurodevelopmental disability that affects communication, social interaction and behaviour. More than 1 in 100 people are on the autism spectrum, with about 700,000 adults and children with autism in the UK. ASCs are typically diagnosed in childhood (although some diagnoses occur later in life) and some common signs include repetitive behaviours and routines, delayed speech and language skills, and difficulty with social interactions and non-verbal communication.

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Expressive and receptive communication can be affected including problems with understanding facial expressions, gestures, tone of voice, irony and sarcasm, often taking what is being said literally. There are also problems with imagining what others are thinking and feeling (this is called theory of mind), as well as play and storytelling especially when among others. Often avoiding eye contact and struggling socially, children and adults with an ASC can easily get judged, which creates significant anxiety. These social interaction challenges can lead to difficulties making and maintaining relationships.

Alongside this, a child or adult with an ASC may struggle with sensory sensitivities, for example issues with noise, taste and textures, making diet limited and certain environments distressing. Changes to routines and transitioning can be extremely hard and all these challenges can create so much stress and anxiety that an emotional meltdown occurs. However, people with an ASC also have many strengths: hyperfocus on specific interests, detailed pattern recognition, significant attention to detail and exceptional problem-solving abilities. All these skills are the reason there are recruitment agencies dedicated to placing neurodivergent people in jobs with employers seeking their strengths and talents.

As with your nephew, there are often developmental delays in reaching social, emotional, communication, cognitive and physical milestones. Children with autism learn and behave differently from neurotypical peers, such as learning to use the toilet later: research indicates that almost 50 per cent of autistic children aged 4-5 are not toilet-trained. This is because they learn new skills more slowly than others and can also be a result of sensory problems or learning disabilities. Similarly, breastfeeding may continue later for those with an ASC because it soothes a child who can find the outside world unsettling, confusing and difficult to navigate.

Many autistic children’s development will continue like their neurotypical peers’ until it slows down and they miss milestones. These differences can be obvious — for example, not speaking or making eye contact — or less so, such as not pointing at things (the assessment of pointing is used in many autism screenings). This would mean that your brother and his wife would have noticed delays or differences over time, eventually leading to an assessment where they would learn that their son had an ASC. This can often be a shock, leading to a huge adjustment for parents who need to process and understand how their child will develop and be different from their peers. There are also understandable anxieties about whether they can parent well and navigate the challenges ahead, including whether their child will be judged and excluded and what kind of quality of life they will have.

Alongside worrying that their children will be judged, they will also fear and even experience judgment themselves. A study of parents of children with an ASC asked them about their biggest challenges. They ranked dealing with judgments from others second only to actually dealing with their child’s behavioural problems. As there are often no outward signs of autism, children with an ASC may experience greater judgment than those with more visible disabilities.

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When you see your nephew, the way his parents choose to manage him may reflect a number of these complex issues. A change in routine, a new environment, new or less familiar people around — these will all potentially unsettle their son, so they provide distraction (the iPad), familiarity (his preferred foods) and comfort (co-sleeping). As his aunt, however, you can provide this little boy with experiences that would be developmentally stimulating. For example, active play to understand and learn to name feelings, role-play to develop understanding of social communication and problem-solving, and also social stories, which are narratives designed to illustrate specific situations and problems and how to deal with them.

Developed in the early Nineties by the paediatrician Carol Gray, social stories help children with autism to understand social norms and gain communication skills that do not develop naturally for them because they struggle to learn by imitation on their own. Using gentle, positive and supportive language, descriptive and coaching sentences as well as fun illustrations, the stories focus on a specific topic and will answer six questions: where, when, who, what, how and why? You could write some fun, goal-specific, positive and engaging stories around specific behaviours for your nephew — eating new foods, for example. You and he can enjoy them together and they can enable him to develop an understanding of concepts, ideas, skills and behaviours; see autism.org.uk.

Additionally you could support your brother and sister-in-law by discussing, with empathy, some of the challenges they face and suggesting that they get some support, as would be normal for parents of children with additional and complex needs (ie not indicating a failure of parenting). See the family support section on autism.org.uk. I wish you well.