Through their eyes: fathers of autistic children

Cutting through the stereotypes to reveal some first-hand perspectives

iStock.com/A-Digit

We don’t talk enough about the lived experience of fathers of autistic children, so that’s what I’m doing today.

My experience as the mother of an autistic child is that frequently, but not exclusively, the primary caring role is taken by mothers.  That is not to say that fathers aren’t deeply connected to their autistic children, and of course every family is different. 

Before I began to reflect on the lived experience of fathers of autistic kids, I suppose I had an attitude of weary impatience that other mothers of autistic children might recognise in themselves as well. I wanted to move beyond this to look more deeply at what the issues are for fathers.

I spoke to many fathers of autistic children in the course of writing this article, and this experience had an unexpectedly profound effect on me.  I am grateful to each of them for their candour in telling their stories, sharing successes, challenges and experiences.

Out of respect for them and for the privacy of their children, I have chosen not to identify them. So, a huge thank you to my dads for being willing to get involved and share your experiences.  You know who you are.

The topics that I want to highlight in this article are nuanced and complex. I will be developing many of them in more detail in future articles.  If there are topics that you would be particularly interested in hearing more about, please let me know in the comments.

Here are the key things that these men would tell fathers who are just beginning their autism journey:

If you’re in denial (be honest: you might be), put in the work to get past it as quickly as you can.  The sooner you accept your child’s autistic identity and positively commit to building a supportive environment in which they can flourish, the better it is for you, for your partner and for (all) your children.

Stop focusing on trying to “fix” them. Try to fix their environment instead. 

Focus on the process as a way to positively reframe the experiences you have as a family.

Take care of yourself.  Give yourself respite and maintain contact with friends, but remember that your partner may be struggling under an incredibly heavy load and also needs respite.  As one dad put it, “nothing works if the parents aren’t working.”

Actively engage in upskilling yourself.   

Pay attention to siblings’ needs.

Consider whether the culture in your career environment is right for you and your family.

Find medical specialists and therapists whom you respect and who actually have empathy and care about your family situation.

There’s another message that I took away from these conversations. For some of these men, the task of simply putting one foot in front of the other - just getting through each day’s challenges - sometimes left them with limited time or emotional capacity for anything else. And many of them felt that peer support wasn’t really their thing.

Peer and other support systems for this cohort of men need to be frictionless and responsive to men’s way of working through things. If it is too hard to find and access those resources, many men don’t have the emotional bandwidth or personal inclination to make it happen on their own.

It’s not that there aren’t peer supports for men. There are, and they make a difference. But I think we should be doing more to meet men where they are, and creating more support resources that are responsive to their way of working through issues. We need to do better at talking their language.

Over the years, mothers of autistic children have spoken to me about their sense of carrying the entire emotional and physical load of caring for a neurodiverse child.

When my son was younger, it was not common to see dads at the social skills groups, therapeutic play groups, parent support groups and in the waiting rooms for allied health professionals. 

I recall once being asked to attend a peer support group to speak to parents of recently diagnosed children.  The group was comprised exclusively of women. Those mothers all told a story of feeling unsupported, to a greater or lesser degree, by their partners. 

But even though this is absolutely the reality of many mothers’ experience, there is a disconnect here. It’s an unbalanced picture that doesn’t fully recognise the challenges for fathers.

I spoke to several men for this article.  One is still in the early days after a diagnosis, but most of them are many years into their lives as parents of autistic children and were able to give me the long view. 

Their autistic children range in age from 11 up into the early 20s.  Some of their children are girls and some boys.  Not all of them had an early diagnosis. Some of them have mild autistic traits, while others have more severe difficulties with social interaction and communication, or live with co-morbidities like anxiety that significantly impact their daily lives.  One man I spoke with is the father of a child who lives with severe physical and intellectual disabilities and requires 24/7 support and care.  There is at least one sibling in the family in all cases.  In many but not all cases the siblings are neurotypical. None of the dads is the primary carer of their neurodiverse child(ren).

The group of fathers I assembled has no statistical significance.  It is not representative of the Australian male population as a whole or even the population of fathers of autistic children as a whole.  These fathers all have high levels of education and are successful professionals and entrepreneurs with demanding careers. Some have made difficult choices about their careers to balance their family’s needs. They are generally aged in their 40s or 50s.  Each is still in a relationship with their autistic child’s mother,¹ who is herself a highly educated professional.

While experiences are diverse, there were some recurring issues that emerged from my conversations. I have tried to draw the common themes from these fathers’ lived experience as fairly as I can.  

Letting go of the white picket fence scenario: from denial to acceptance

Denial was not a universal issue amongst the fathers who spoke to me, but most of them went through a period of denial early on.   

Overall, they offered more advice on the importance of accepting their child’s autistic identity than they did on any other aspect of their lived experience.

Denial seems to have taken (at least) two forms for my dads.  To be clear, not every dad experienced denial, and not every dad experienced both of the types of denial I observed.

The first type of denial was about whether a diagnosis was necessary in the first place. This arose frequently where the child’s autistic traits were mild at the time of diagnosis.  Some of our conversations sounded a bit like this:

“Yes, there were some quirks, but I thought that was just how my child was.  I didn’t think we needed to put a label on it because when I was growing up we didn’t go around labelling every quirky kid.”   

This type of denial was often expressed as resistance against the “autistic” label, but interestingly, sometimes it was hidden by a detached willingness to let the other parent take the lead on pursuing the diagnosis.

The second type of denial sprang from the need to accept that they weren’t going to be able to “fix” this.  I have written previously about the futility of trying to “fix it” - to read more on this please click on the button below. 

Some of the fathers acknowledged what they identified as a very male way of treating the diagnosis as a problem to be fixed.  They felt it was natural to want to bring their personal and professional skills to bear in that problem-solving process and some recognised that this led to some wheel-spinning as they tried without success to fix things.  One or two of them felt that in some ways it prolonged their early denial and delayed their acceptance of their child’s autistic identity.

But I think it’s a disservice to fathers to write off their initial unwillingness to accept that they couldn’t “fix it” as mere denial.  It’s actually the anguish of loving your children that produces it.

Some of the fathers who felt this type of denial had struggled to some degree with the sudden and shocking recognition that their parenting role was dramatically different from what they thought it would be.

They had all entered fatherhood with the assumption that their children would be independent in adulthood.   Now some of them needed to radically reframe their idea of fatherhood, to embrace the likelihood of a lifelong commitment to providing a high or very high level of hands-on care and/or practical day-to-day support for their adult autistic child.

For those who had this experience, it was a bigger emotional bombshell, I think, than any of them might have recognised at the time.  It’s precisely because this is such a radical reframing of what most people consider the “default” parenting scenario (in which the children grow into independent adults) that it’s perhaps not surprising that they might initially focus on trying to “fix it”.

Some of the fathers I spoke to were deeply afraid and concerned about what would happen to their autistic child after his or her parents had died.

This fear can be particularly acute for parents of autistic children, who understand only too well how far society still has to go, to truly understand, embrace and support autistic people.  It is a fear that too many of us have known while lying awake in the middle of the night, worrying about how our children will cope without us and hoping that there will be others ready and willing to step into our shoes when the time comes.

A period of denial, that allows the realisation that your autistic child will always live with disability to take shape gently, is well understood as a defence mechanism in psychological terms.  It can be protective for parents just starting to come to terms with their fears in the early days after a diagnosis.   

My fathers all recognised that it is in nobody’s best interests for denial to be prolonged - not the child’s, not the family’s and not their own.  One repeatedly emphasised the importance of the parents building a supportive environment in which their children could flourish.

They all said they would tell a father who had just received a diagnosis that the sooner he could accept his child’s autism as an intrinsic part of who they were, the better.

Peer support and counselling

Fathers sometimes need extra help to move through their feelings of denial, even if they are reluctant to access that help.  They need compassion and support, and peer support is often recommended.

The NDIS can assist parents to access local parent-to-parent peer support in Australia. Also, State and nationally-based bodies like Amaze/ Autism Connect, Autism WA and Autism Awareness Australia (to name just a few) offer support to connect with or establish parent peer support groups, and communities proliferate of course on Facebook and other social media.

Perhaps because their children are older (meaning that the NDIS in particular did not exist in the early years following diagnosis for most of them), these pathways were not raised in any of my discussions with this cohort of fathers.

Fewer than half the fathers I spoke to had accessed any informal peer support over the years. None of them had accessed formal support groups, although some had received counselling. 

Some thought that perhaps it might have been useful if they had accessed peer supports. One felt that the primary benefit of informal, one-on-one support could have been to help him get from denial to acceptance. By contrast, another felt that maintaining contact with friends who knew little to nothing about his family circumstances was a higher priority.

Most of them spoke as if it were up to them to do the work on their own of coming to terms with their role as fathers of neurodiverse kids. Some had only sought counselling as their families descended into crisis.

Where they had had access to informal peer support, this was generally fortuitous (for example, they worked with someone who had an older autistic child and was willing to share their experience, or a friend had connected them into an informal group).

Although I observed that this could be partly generational, and things might be changing for younger dads, talking to my group of fathers reinforced my sense that we haven’t yet got peer support right for men.

This is not to say that peer supports don’t exist for men. They do, as I’ve noted above, and they make a difference. But interestingly, most the fathers I spoke with were reluctant to gather in a group setting to talk to me. They generally preferred a one-on-one conversation and some noted that even that was a slightly unnatural setting for them.

It’s the way women talk with their female friends. But is it really the way men prefer to interact?

Peer support designed specifically to respond to men’s needs is too hard to find, too hard to access and does not seem to be talking their language. It’s not reaching men, or at least these men, where they are, maybe because it is not responsive to their natural way of working through their issues.  I’ll touch on this point again below in relation to isolation.

Disclosure

Disclosure of a diagnosis is a nuanced and sensitive issue for autistic people and their supporters, and I plan to look at this in more detail in another article. I know fathers of autistic kids who have never told their close friends about their child’s diagnosis.  I am aware of a family where the mother’s side knows about a child’s diagnosis but the father’s does not.  Many families choose not to disclose to schools, especially if the child’s neurodiversity is subtle. Many families are motivated by the desire to respect the child’s privacy. Most importantly, the child themselves may have strong feelings about what disclosure is appropriate. There is no “one size fits all” approach in practice.

Disclosure at work

In this cohort of fathers, a pattern emerged.  The diagnosis had rarely been disclosed to work colleagues, at least in the early days.

One father commented that it would have been pointless to disclose at work because it would have made no difference to conditions and support in his work environment. 

Another had always felt that it was simply not relevant for work colleagues to know. 

Some fathers became comfortable over time with being open with colleagues about their child’s needs whereas others remained sceptical of receiving any genuine understanding and support.  Many emphasised that older managers had lacked the skills and understanding to accommodate the needs of a parent caring for a neurodiverse child.

One felt that his choice to selectively disclose was driven more by his desire for personal privacy generally, rather than a specific concern about autism-related stigma.

Different fathers had different ways of handling the actual disclosure, whether it was at work or in other comparable settings.

One father welcomes the ascendancy of the term “neurodiverse” because he feels it is a softer, less-loaded term to use when describing his child in comparison with the word “autistic.”

Another realised early on that he needed to develop a short personal script that he could rely on to provide just enough information each time a casual conversation led to questions about his family.  This strategy helped him to navigate conversations that would otherwise have been deeply uncomfortable for him.

Disclosure within the wider family

Disclosure to the broader family was an equally complex issue, but in a different way.

We all know it takes a village to raise a child, and that is especially so for autistic kids, where the caring role can be very demanding depending on the needs of the child.  However, it is an all-too-common experience for families with an autistic child that that informal village just, somehow, drifts away or never really comes together at all.

One father described how isolating it was to feel that some wider family members just didn’t want to know about his family’s circumstances and the challenges he lived with.

Several fathers felt that their lived experience was simply too foreign to the grandparents’ own experience for them to be of much help or support.²

Sometimes grandparents struggled with the label or thought the parents were over-reacting.  Even when they did understand, sometimes it was hard for the grandparents to let go of the preconception that this was essentially a discipline issue. However, one father felt that once the grandparents understood properly they were very supportive, so it was worth the effort to bring them along for the journey.  Another had a very positive experience with supportive grandparents on both sides.

It was significant that some grandparents themselves had had a neurodiverse (and diagnosed) child, which gave rise to immediate empathy and understanding.

Grandparents’ traditional approaches to parenting were seen as too inflexible.  One dad spoke of his own father’s achievements-based approach to parenting, which got in the way of building understanding and a relationship with his autistic grandchildren. He spoke of his own discomfort at family gatherings where so much of the chat was around the various milestones and successes of all the other grandchildren.  He has learned to celebrate experiences rather than outcomes.

The many dimensions of isolation

Research across a variety of fields has highlighted the mental health risks associated with loneliness and social isolation for men.

In my discussions, it became clear that fathers experience many types of isolation.  For many, it’s during the initial denial period.  But once that passes, their choice not to talk about their child’s diagnosis at work, or their sense that family and friends just don’t understand, produces another type of isolation. 

But above all, I saw how strongly some fathers are affected by a very distinct form of isolation that comes from simply putting one foot in front of the other, just getting through each day’s challenges, with limited time or emotional capacity for anything else.

It suggests to me that support systems for these men need to be frictionless. In other words, if it is even a little bit hard to find and access those supports, many men don’t have the emotional bandwidth to make it happen on their own.

Self-care

All the fathers I spoke with recognised the importance of getting past the early turbulent days and finding equilibrium wherever possible.  One father commented that he hoped other families would be able to move more quickly to the stable state that it had taken his own family years to achieve.

But I noticed another insight emerging in our conversations too, which was the importance of self-care.  Some fathers admitted they had sometimes neglected their own needs and they recognised that they could have taken better care of their wellbeing earlier in the journey.  As one dad put it, “nothing works if the parents aren’t working.”

Towards a better future

Each father I spoke to has had a different experience.

They all want fathers coming along after them to be supported to overcome any feelings of denial and embrace their autistic children for who they are. They want those journeys to be easier than theirs have been.

But not many had acted on the idea, along the way, that they themselves might have needed, and certainly deserved, more support as fathers.

We need to be better at this. We are not doing well enough as a society at developing positive and effective supports that feel relevant to men and speak their language. We should be doing more to meet men where they are, and creating support resources that are more responsive to their needs and preferred modes of communication.

If we harness peer support more effectively to help fathers move from denial to acceptance, we improve outcomes for their autistic children. Stay tuned to learn why I believe that in my next post!

Thank you for reading. As always, I am indebted to my autistic son and to the other autistic people who have educated me about the lived experience of autism. I do not presume to speak for them. I aim to share my lived experience while deferring to, and with the utmost respect for, theirs.

Wondering about some terminology in this article? Find explanations of key terms in the Glossary:

Can’t find the explanation you were looking for? Let me know in the comments.

1. This is a bigger deal than you might think.  Too many fathers of autistic children have left their families, leaving their former partner to carry the load as a single parent.

2. Partly this is driven by historical considerations - Kanner and Asperger did not publish their celebrated research until the 1940s and it took many decades to develop the understanding of autism, such as it is, that we have today.  For generations of autistic people born earlier than Millennial autistics, autism was often either misdiagnosed or missed altogether.  I don’t think it’s going too far to say that autism as we understand it today was completely outside the lived experience of most Baby Boomer parents.