Psychologist Nathalie Fontana, specialized in autism, provides comprehensive insights into the eight major challenges faced by parents of autistic children. From daily routines to education and maintaining family balance, this expert report offers practical insights and solutions.
Supporting an autistic child can be a complex and demanding challenge for families. Parents often have to juggle a number of issues: day-to-day life, education, social interactions, crucial decisions and maintaining family balance. Here’s an overview of the main challenges:
1. Autonomy, hygiene and sensory characteristics
The sensory characteristics of autistic people often have a major impact on all aspects of daily life, including hygiene, eating, dressing and social interaction. Sensory difficulties can make basic tasks complicated and frustrating for children and parents alike.
Furthermore, executive functions, which are often impaired in autistic people, can complicate task planning, organisation and time management. These difficulties can hinder the acquisition of autonomy. Adapted approaches can, however, enable effective compensatory strategies to be gradually developed.
2. Education: setting limits and providing structure
Bringing up an autistic child means striking a balance between caring and structure.
- Setting clear, appropriate limits is essential to providing a reassuring framework, while respecting the child’s individual characteristics.
- Visual communication techniques, adapted to the child’s language skills, are often the most effective in facilitating understanding and exchanges. Structuring time visually, for example with timetables or pictograms, also helps children to find their bearings, to anticipate and to reduce their anxiety in the face of unpredictability.
By combining a structured approach with appropriate communication, parents can promote their child’s learning, independence and peace of mind.
3. School challenges
School remains an environment that is often poorly adapted to the needs of autistic children. Many schools are still insufficiently trained in the particularities of autism, which can complicate inclusion.
Parents therefore need to be fully aware of their child’s rights (accommodation, AVS, PAI, etc.) and not hesitate to contact specialist centres of expertise to maximise their child’s chances of success.
Fatigue is one of the biggest problems for autistic people. They often find it difficult to recognise their vital needs, particularly their tiredness, let alone express them in time. It is therefore essential to spot the signs of fatigue and to provide sensory and social areas where the child can rest during the day. At home, it’s vital to give your child time to unwind after school, in a soothing environment, to maintain his or her equilibrium.
4. Difficult choices concerning suitable structures
Choosing to place a child in a specialised facility or remove them from a traditional school setting is often a painful decision for parents. This step can generate doubts, guilt and questions.
It’s important to get informed beforehand by talking to other families, recognised associations or competent professionals. It is often beneficial to have psychological support when making these decisions, as it helps to avoid feeling guilty and to feel supported.
It is also essential to remember that these choices are not definitive. A child’s needs change over time, and moving into an adapted setting may only be a transitional stage before the child is eventually reintegrated into a more traditional setting.
5. Crisis management, risk behaviour and adolescence
Adolescence is often a delicate period for young autistic people, and can be marked by oppositional outbursts, risky behaviour and hormonal upheaval. These challenges demand constant adaptation and increased vigilance on the part of parents.
In addition, adolescence often raises issues relating to sex education. It’s crucial to address these issues with a tailored approach that helps teenagers better understand their bodies, emotions and social relationships.
This is also a time when young people may reject their diagnosis or the accommodations that have been put in place, in an attempt to “fit in” and “do what everyone else is doing”. This rejection can generate additional stress and make managing situations even more complex.
6. Finding competent professionals
Finding qualified professionals is often a real obstacle course. To maximise your chances, it’s important to get information from other parents, recognised associations or specialist skills centres. These resources can point you in the direction of trained and experienced professionals.
Finding out about validated therapies, such as cognitive behavioural therapy (CBT), neurodevelopmental methods and sensory therapy, is essential if you are to make informed choices.
In some cases, it may be necessary to cross the borders of your region or country to access methods or professionals not available locally.
7. Preserving family balance
Autism can put a strain on couples and families. 9 out of 10 couples find themselves in serious difficulty, and separations are common. To avoid this, it is crucial to set aside time for the couple, to maintain healthy communication and to train together to agree on educational and organisational decisions.
Siblings, who are often affected, must not be forgotten. It is important to give them time, to involve them in daily life and, if necessary, to include them in discussion groups or programmes dedicated to siblings. Specific care may also be envisaged to help them better understand and live their role within the family.
8. Dealing with discouragement
Families’ careers are rarely linear. Regression or stagnation after periods of progress can be discouraging. What’s more, changes, even positive ones, can lead to a great deal of fatigue and anxiety, particularly in verbal autistic people with a good intellectual level, who are often more aware of their differences and social expectations.
Certain situations, such as holidays, family celebrations, birthdays or even moments of free time, which we might expect to be pleasant, are often sources of stress and fatigue for autistic people. These events, marked by a strong emotional or sensory charge, require adjustments to enable them to take part with peace of mind.
Tools such as the Saccade method (Brigitte Harrisson, Canada), based on a conceptual language, can help make sense of situations, anticipate the unexpected and decode the environment. This enables autistic people to gradually reduce their fatigue and anxiety, while becoming more independent in managing complex situations.
These challenges, while numerous, are not insurmountable. With the right tools, a solid support network and a caring approach, it is possible to build a calmer, more fulfilling daily life for the child and his or her family.