By Kaw Baldeh
When we talk about autism, we rightly ask what autistic children and young people need, but how often do we stop and ask what their fathers need?
As a father of an autistic child, this is a question I have increasingly found myself asking. It is also a question shaped by my professional experience. As a Health Facilitation Nurse supporting people with complex health needs, including autistic people and people with learning disabilities and mental health issues, I have had the opportunity to see first-hand the realities that individuals and families can experience when navigating health, education and social care systems.
One observation that has stayed with me is the significant role many mothers play in supporting and advocating for their children. They are often the ones attending appointments, communicating with schools and healthcare professionals, navigating services, coordinating support, and advocating for their children’s rights, inclusion, and wellbeing.
Their contribution is enormous and deserves recognition.
But where are the fathers?
This is not about comparing mothers and fathers or diminishing the vital role that mothers play. Rather, it is about asking whether fathers are receiving sufficient recognition, inclusion, and support, and whether some fathers are becoming less involved at a time when their children may benefit from their presence and engagement.
For fathers who are actively involved, the autism journey can involve learning about their child’s individual communication style, understanding their preferences and support needs, navigating diagnostic and assessment pathways, advocating for inclusive education and appropriate healthcare, attending appointments and supporting their child to develop autonomy, confidence and independence in ways that are meaningful to them.
There can also be significant emotional, social, and practical pressures. Fathers may have concerns about their child’s education, relationships, well-being, independence, and future opportunities. Yet some fathers may be less likely to engage with formal support networks or openly discuss their experiences. This can make their perspectives and support needs less visible to professionals and to wider society.
There is, however, another side to this conversation that we should not ignore.
In some families, fathers are absent or become less involved in their children’s lives. From my own experiences as both a father and a healthcare professional, I have witnessed situations in which mothers carry a substantial proportion of the responsibility for supporting and advocating for autistic children and young people.
When that happens, the impact on mothers can be considerable.
The responsibility can extend far beyond day-to-day parenting. Mothers may find themselves coordinating appointments, communicating with multiple professionals, advocating for appropriate educational provision and healthcare, supporting their child’s emotional wellbeing, navigating complex systems and managing competing family responsibilities all while trying to maintain their own wellbeing and, in some cases, doing so with limited support from the child’s father.
This raises an important question, Are we doing enough to support the whole family rather than focusing exclusively on the needs of the child?
Autism is part of a person’s identity and experience, but the availability of appropriate support, accessibility and inclusion can have an impact across the family. A genuinely family-centred approach should recognise the diversity of families and ensure that parents and caregivers receive appropriate information, support, and opportunities to participate in decisions concerning their children.
Where fathers are present and willing to participate, they should be encouraged and enabled to become meaningful partners in their child’s care, education, healthcare, and advocacy. Fathers should not have to find their own way into the conversation. Don’t be ashamed of your child.
Professionals across health, education, and social care also have an important role to play. Fathers should be recognised as parents, caregivers, and advocates and given appropriate opportunities to contribute to discussions and decisions about their child’s support, education, health, and wellbeing.
At the same time, we must avoid assumptions. Not every father is absent, and not every mother is the primary caregiver. Families are diverse, and circumstances can change. Some children are raised by single parents, grandparents, extended family members, foster carers, or other important people in their lives. What matters is that the people who are actively involved in a child’s life are recognised, respected, and appropriately supported.
What deserves greater attention is the visibility and inclusion of fathers within the autism conversation.
We need more opportunities for fathers to talk openly about their experiences, seek support, learn from one another, and develop the confidence and knowledge to advocate for their children. We also need to recognise the extraordinary pressures that some mothers experience when they are carrying the majority of parenting, caring, and advocacy responsibilities with little or no support from the child’s father.
Ultimately, this is not about fathers versus mothers.
It is about creating stronger, more inclusive support networks around autistic children and young people and the people who care for them.
The autism journey does not belong to one parent. It is a family experience, although every family’s experience will be different. If we are serious about genuinely family-centred and inclusive support, fathers can not remain behind the scenes and mothers should not be expected to carry the responsibility alone.
Most importantly, every conversation must return to the autistic child or young person: their rights, dignity, autonomy, communication, wellbeing, inclusion, and opportunity to live a fulfilling life on their own terms.
Perhaps it is time we stopped asking only:
“What support does this autistic child or young person need?”
And started asking:
“What does this whole family need to ensure that the child or young person can thrive?”
A message to Gambian fathers
To Gambian fathers who are raising an autistic child or young person, I want you to know that you are not alone.
If you are finding the journey difficult, are unsure where to seek support, or simply want an opportunity to talk with someone who understands some of the experiences involved, I am willing to listen. As a father and as a Health Facilitation Nurse, I am happy to share my own experiences while also listening to and learning from yours.
Creating safe and culturally inclusive spaces for fathers to speak openly is an important step towards building greater understanding and reducing isolation.
Let us start the conversation. Let us listen to one another. Let us support one another. And together, let us help more fathers find their voice, understand their children’s rights, and become active partners in their children’s lives.
Our children deserve nothing less than a family and a community that sees them, values them, listens to them, and supports them to flourish.