From the time my oldest son was around 9 months old, I had concerns regarding his development. As a first-time mom, I set aside the worry that I was being overly paranoid and discussed what I had seen (and googled) with my husband. He was supportive of opening up a conversation with our son’s doctor, and from that day forward, we started what would end up being our journey to an autism diagnosis. That’s a very, very condensed version of history. Any parent, caregiver, or self-advocate who has gone through this process knows firsthand how depleting and frustrating it can be.
We consulted and had appointments with everyone from audiologists to ophthalmologists (and plenty of other “-ologists” in between), pediatric specialists, and ultimately, a developmental therapist. My husband attended every specialist appointment, filled out countless forms, paced with our son up and down hallways when the wait got too long, and was our rock and foundation throughout this arduous process. Although we had each assumed different responsibilities and roles, at no time was one of us more critical than the other. You wouldn’t know that by the way the autism community addressed us though. In our experience and that (anecdotally) of others in our community, there is a clear bias toward the mother and her role as the caregiver.
In our experience and that (anecdotally) of others in our community, there is a clear bias toward the mother and her role as the caregiver.
I want to take a minute here to address two very important facts before I continue. First and foremost, as much as I’m about to speak about the role fathers play and how important it is for them to be recognized within the autism community, I’m speaking only from the point of view of a caregiver and parent. I cannot speak for my son or his experience as an autistic person, and I won’t. If he chooses to share one day, I will support him as I have in every other endeavor he’s undertaken since he was born, but I’m not here to tell his story. I simply cannot. Nor am I asking for praise or recognition for raising the incredible person that he is.
My whole purpose and intent here is to advocate for equal access to support and resources for any parent or caregiver of a child with autism, so they can be as equipped and as confident as possible when navigating this diagnosis. My son’s ability to access every service he needs, in a way that is respectful, dignified, and meets him where he is, will always be the priority, regardless of the experience we, as his parents, encounter. Having said that, it’s also true that the more informed and supported we are, the better we’ll be able to help him. Both of us. Mom and dad.
Secondly, I know that every situation, family, and circumstance is incredibly unique. Families and support systems look completely different for everyone, and the makeup of our individual villages varies endlessly. Even within the household, responsibilities and who takes the lead and where can vary from day to day. While my focus here is on fathers, I understand and acknowledge that this may not be relevant to everyone. I can only speak to my personal experience and what I’ve seen myself during this journey, and I hope that even if you can’t relate, you can understand the importance of what I’m trying to relay.
It is vital that all caregivers are given the same support and guidance. As we went from appointment to appointment, from endless phone calls to equally endless questionnaires and assessments, I was always caught off guard by how people looked to me for answers. How they’d ask for my contact information. How my phone would be ringing nonstop with questions and appointment updates, results and requests for further clarification. More often than not, the pamphlets we were given showed photos of mothers and children, as did the posters in the waiting rooms. Notably, many of the professionals who have worked with my son have been women, which I do feel contributes to the issue of mothers being seen as the primary caregiver, leading to a culture where women are given the greater amount of consideration.
As a mom, I’ve also had the incredible advantage of being able to find countless online support groups, where I’ve been able to gain insight, guidance, knowledge, and a sense of community. I’ve been able to hop onto forums and pages to get referrals and find tips and suggestions for everything from activities to grants and funding. While that’s definitely a positive, there are undeniable negatives as well. I felt an enormous amount of pressure to be the one running to meetings and therapy appointments and, in general, to independently bear the role of caregiver. I then felt like I was failing if I couldn’t get out of work or make it to an appointment and my husband had to attend alone. The expectations were simultaneously disrespectful to my husband and overwhelming for me.
In the realm of social media, the concept of #autismmoms is one that is fraught with controversy. There are endless examples of mothers sharing their stories, some of whom have tens of thousands of followers. This encourages a celebration and recognition of their role and advocacy. Accounts focused on the father’s perspective aren’t as prominently celebrated, and when they are, it can be borderline offensive. The culture and community is often, once again, focused on the mother.
The conversation revolving around the representation of mothers and fathers is nothing new. Everywhere you look, there are memes pointing out the fact that fathers aren’t babysitting their kids, they’re parenting. When it comes to raising an autistic child, it’s even more critical to watch how we speak about and relate to the men in our children’s lives. My son knows firsthand that his father is a strong, kind man who loves him unconditionally. He knows that his father is a fierce advocate for him and proud of him beyond words. But when he goes out into the world and hears how cute it is that his dad is at drop-off, that’s demeaning and unfair.
My husband does drop-off and pick-up every day. When we have meetings, we work around both of our schedules, so that we’re both in attendance. We both speak up when need be. My husband has worked tirelessly on making our home, and my son’s room specifically, as safe and accessible as possible for him, always looking for new equipment or resources to better our son’s quality of life. He advocates passionately and loves our son fiercely. And he is not alone.
There are countless fathers at drop-off and pick-up, at every assembly and school event. There are fathers who volunteer and fathers who take a quieter role, but whose presence is just as significant. There are fathers who attend meetings, appointments, and are as present in the waiting room as any mother there. There are fathers tailoring IEP plans, fighting for accessibility, and dedicating themselves to the well-being of their children, in a society that is often dismissive of their abilities.
My husband advocates passionately and loves our son fiercely. And he is not alone.
My husband gives and gives and gives, and it is so important that this is recognized. I don’t mean with confetti and celebrations. I just want him to be offered the same level of respect, support, and services that would be offered to any mother. Where there’s a mom’s coffee group, there should be one for dads, too. If you aren’t going to say it’s so sweet that I take the time to be at my son’s assembly, then don’t say it to my husband.
Like I said before, when parents feel heard and supported in their advocacy, they’re better able to support their child and ensure that they’re being given every opportunity. When their role is diminished, their voice not given the space, they have to work twice as hard for both them and their child to be heard. We need to change the conversation and culture. We need to stop referring to a father’s involvement as extraordinary or “cute.” This is not only hurtful and disrespectful for my husband, but it also isn’t something I want instilled in my son.
Being a parent can be exhausting and challenging in the best of times. Add to that a diagnosis or a child who requires special accommodations, and the need for guidance and support is undeniable. It’s critical to recognize and uplift fathers in this community. One in 54 children in the US has been identified with ASD, and the prevalence among boys is four times higher than among girls. What are we telling our sons when we don’t give their fathers a seat at the table or the support and services offered to their mothers? When they aren’t represented in pamphlets or posters, in classrooms or offices? And for that matter, what message are we sending our daughters? There is so much work that needs to be done in terms of acceptance and awareness regarding neurodiversity. Ensuring that families feel supported throughout their journey, fathers included, is a good place to start.
