Welcome to Part Two of our two-part blog series featuring the stories of four fathers who share the wisdom and insight they have gained while navigating the complexities of parenting an autistic child. Click here to read Part One of this special Father’s Day blog series. Let’s continue to explore the stories of these fathers and learn how they have navigated the complexities of fatherhood in their unique circumstances. Each father’s responses are denoted below with their initials: BS, EC, DM and JG.
Resources
In what ways do you believe society can better support and understand the needs of families with autistic children, and what changes would you like to see in the community to create a more inclusive environment?
BS: Community members should spend more time volunteering in classrooms and community activities so they can see how children with autism are different, but still have the mutual need for love, kindness, and understanding. For example, my son plays on a soccer team with neurotypical children. His coach has had experience coaching children on the spectrum, so he knew how to balance making our son feel included while also supporting his additional needs.
We appreciate that even if our son does not understand a concept that the coach is teaching, the coach has never made him feel less. When communities come together in this way, not only do they learn to accept our children, but they also get to know the families who love and support individuals on the spectrum.
Also, I would like to see more camps for children with autism. This year, our school system will not provide the usual summer camp at my son’s school. We don’t know anyone associated with other summer programs, so we are hesitant to sign him up for a camp not knowing how he would be treated and embraced. Instead, he will now have to stay home all summer. Though my wife works from home, she isn’t available to entertain him throughout the day. We feel like we have been left with very few options to help our son continue to thrive during the summer break.
EC: For people in society to show some grace! Show some empathy! Put yourself in someone else’s shoes and think about what that family might be going through, the challenges they face, and the support they need… I think one of the most important things is to diagnose autism at an early age. Our concerns started with conversations between my wife and me. We expressed them to our pediatrician and unfortunately, they were not taken seriously. I feel like pediatricians and state supported services should be tailored to look for signs of autism early and there should be CLEAR programs in place, so families clearly know what resources are available to them. I do not think the state of North Carolina for example has done enough to offer state supported parental education or education services and programs to families with autistic children. When new parents give birth in the hospital and they are informed about things like diseases, vaccines, feeding, etc. there should also be resources provided about what to do if you start seeing signs of or experience potential mental and physical delays. That should be supported with follow-up evaluations or examinations by the state. Childcare has been particularly disappointing because many of childcare establishments, such as some day cares for toddlers and older children, summer camps, programs, etc., make it very clear that they are not equipped (nor making any effort to be equipped) to have your special needs child at their establishment. Now I understand there may be some liability concerns driving that and maybe some of these establishments are just too afraid to deal with that, but even if that’s true, it speaks to the larger problem I’m talking about and why an overhaul of how we approach this is needed.
DM: I think we could have more acceptance, more accommodations, and especially in our smaller towns, more compassion with professionals, coaches, and others who work with our children.
JG: More understanding and education about autism, the spectrum, and its effect on the family.
I think we could have more acceptance, more accommodations, and especially in our smaller towns, more compassion with professionals, coaches, and others who work with our children.
What are some of the programs and supports that you have found most helpful in aiding your child’s growth and development and have empowered you as a father? How have these resources impacted your family’s journey?
EC: Child Developmental Services Agency (CDSA) helped us confirm there was a problem in the beginning and told us about the evaluation that could be performed by Wake County. I really think that’s a gap in helping families to get started on what to do. I also think we’ve gotten a lot of benefit through services like speech therapy, which introduced us to using visual cards for communication and technology devices for speech; physical and occupational therapy that helped with fine and gross motor skills and practicing everyday tasks. Again, many of these services were private businesses that we fortunately had access to. We are just now getting introduced to the Autism Society of North Caroline and excited about what we can learn through the organization. My wife and I attended the recent annual conference that we both found beneficial. We’ve also found the Wake County Autism Society Facebook group to be very helpful in reading about other families going through challenges similar to ours.
DM: Our local Autism Society of North Carolina Autism Support Group was started by my wife, and it has been an amazing outlet of support for families and to connect. I watch my child engage with friends and now even learn to be a leader. I am able to help other fathers now.
JG: Through the Innovations Waiver Program we have been able to get community support assistance. We have also been able to find some placement in both occupational and volunteer work environments.
Supports for fathers
What kinds of support and resources do you think could benefit fathers of children with autism?
BS: A more local (in Mebane) support group specifically for fathers would have been nice to be able to meet regularly to share ideas and resources. Luckily, I did have a couple of friends who were already on the journey, and I was able to rely on them for mental/emotional support.
EC: Early diagnosis and educational programs. The faster you get started and get past what feels almost like seven stages of grief, can you begin to focus on supporting your child and your family…
DM: Definitely a support group where the kids can engage and the families, especially fathers, can participate and connect.
JG: Father-only support groups where fathers can bond and help each other.
Father-only support groups where fathers can bond and help each other.
In what ways do you believe fathers with autistic children can establish a network of support among themselves?
BS: Being transparent and not being afraid to acknowledge or accept the diagnosis is an easy way to make connections. I know of several other children that may be on the spectrum and recently had a conversation with a family member about their child possibly being autistic. I’m proud of the fact that people look at my journey and don’t see fear. They feel open enough to be vulnerable and trust me as a resource. There were men that did it for me and I am proud that I can pay if forward.
EC: Maybe a Facebook subgroup just for fathers so men have more of a forum to discuss issues from a father’s perspective. If there was enough interest, I would like to see some kind of event or small conference that would foster an open environment just for men, as sometimes it might be hard for men to be open with their emotions on this subject and it might be easier to do so in front of a group of other men going through the same thing.
DM: When we find each other, it’s awesome. We can share our stories. I think having a place where dads feel welcome would be important because so many places are more geared toward mothers.
JG: Father-only support groups where fathers can bond and help each other. Activity based.
How can the Autism Society of North Carolina support fathers in becoming effective advocates for their child, their family, and themselves; empowering them to face challenges on their journey?
EC: The experiences I have had with the Autism Society of North Carolina (ASNC) so far have been great. I would encourage ASNC to consider for a future conference that the audience has a chance to go to a mom’s panel discussion and a dad’s panel discussion and then afterwards, compare the conversations and gear it towards more of the parent’s perspective.
DM: Having information in men’s publications. My family didn’t know about the Autism Society for North Carolina for years, and if it hadn’t been for my wife, we still wouldn’t. Targeting men’s magazines or Facebook pages with ads would be a great way to reach d ads.
JG: More programs are needed to help families support their autistic adult children, specifically programs to help young adults establish their independence.
Navigating relationships
How did the news of your child’s autism diagnosis affect your relationship with your spouse? What were some of the immediate emotions and challenges that you both faced?
BS: We were both initially scared for his future and worried about meeting his needs, but quickly jumped into planning mode to make sure his needs were met. I have seen all ends of the spectrum and we just didn’t know where he landed at first. There were so many unknowns. The unknowns are still a challenge, but we feel more prepared now to meet challenges head on.
EC: Getting the diagnosis and confirmation was devasting. There’s no other way to describe or sugar coat it. It was just painful to have people telling you your almost two-year-old child has the learning development in some areas of a six-month old. Saying we were angry, depressed, frustrated, etc., is not enough and doesn’t do it justice. We both cried when we read the evaluation report from Wake Country. The worse emotion by far was helplessness. For maybe for the first time in my life I had no idea what to do dealing with other people telling me about options but not really knowing or having confidence whatsoever as to what it would mean or how it might help. My wife and I managed the best we could, but particularly in the beginning, it was very difficult to say least.
DM: We have always been a really good team, and when one of us is weak, the other is strong. We faced the challenge of finding the right places, the financial burdens, the adjustments to routine, but we navigated it together. I think that’s the only way.
JG: It is very hard on relationships. The best thing you can do is focus on what is best for the child and as best you can work as a team.
We were both initially scared for his future and worried about meeting his needs, but quickly jumped into planning mode to make sure his needs were met.
In what ways did the responsibilities and dynamics within your marriage change following your child’s diagnosis? How did you and your spouse adapt to these changes?
BS: I was able to start implementing resources based on my experience through my job working with children on the spectrum. My wife’s approach was more research based. Eventually, we realized that we had to come together and simply get started with what worked for our son, not what the textbooks told us to do.
EC: My wife and I are a team. We both come from less than perfect and somewhat broken/ nontraditional homes, and because of that we made a vow to each other when we got married that no matter what, we would be in the life journey together, so that did not change. What was difficult however, and honestly speaking more so for my wife, was that in our relationship, we went through a period where my wife took much of the front-line responsibility at home with the kids and there were many times she felt so alone while I focused on going to work. That was very hard on my wife and something that took me some time to realize and make changes to correct it. Not all of that was due to our son being autistic, but having an autistic son and the additional challenges that come with that made the situation even more difficult. Eventually, as most parents in general do, I learned some things for myself, and I learned some things from my wife. I honestly think one of the turning points was seeing our son make progress. That’s what helped my attitude change.
DM: My wife had more responsibilities with the care, therapy, and schedules. I think we adapted fairly well, and I did my best to support her.
JG: In a word stressed. We began to research as a team and became proactive.
Looking back, what message would you convey to your partner regarding the impact of the autism diagnosis on your relationship? What actions do you wish you had taken differently, and what guidance would you offer to fathers who have just received an autism diagnosis for their child?
BS: I would spend more time reassuring my wife. As the leader of the household and the person with the most experience in working with exceptional children, I could have shared more perspective from my real-life experiences.
EC: One word: hope. We did take a few months going back and forth about what our son needed, but fortunately for us, we didn’t waste too much time. We got him started with services before he was two years old and before we had the diagnosis confirmed. I can’t emphasize enough to other families out there how important it is to get your child started early with services if the diagnosis is confirmed by professionals and by a neurologist. But I wish I could go back to my younger self and tell him not to feel so helpless and hopeless in the beginning. I would tell him that his son is going to be a heck of lot smarter than what it seems like at that time, that his son is going to figure out how to take things apart, figure out puzzles, crack his way through locked doors, and a bunch of other things that boys figure out how to do— just like his father did when he was a boy. I’d remind my younger self to support not only his son, but his wife and daughter, to remember that “provide and protect” also means to “provide and support,” and don’t leave anyone feeling alone.
DM: I don’t have any regrets or things I wished I had done. I think we navigated it well.
JG: I cannot stress these four things enough: seek help, be proactive, be consistent, and take care of your physical and mental health.
I’d remind my younger self to support not only his son, but his wife and daughter, to remember that “provide and protect” also means to “provide and support,” and don’t leave anyone feeling alone.
Final thoughts
If you could impart one insight to the world based on your journey as a father with an autistic child, what would it be and what significance does it hold for you?
BS: Hope isn’t lost. There are so many people that are on the journey with you. You would be surprised how many people are touched by your story. I would like to think that when people see my son, they see so much potential and can accept autism as a way of life instead of embracing the negative stigma that many associate with it.
EC: I think the world could greatly benefit from people having a little more grace and little more empathy for people and families in situations that are different from what society has defined as normal. That people should understand that diversity and inclusion is not always a political topic about race but is a human topic about real people who are different, and need supports to be able to enjoy things others take for granted. Additionally, it is important to remember that parents greatly influence the environment in which that child is raised and how that child will ultimately develop.
DM: You have to meet your children where they are and build on their strengths. That took me a long time to learn, and I think it’s important for others to understand.
JG: Creativity and being proactive will be your best tools on the journey of being the father of an autistic child.
What is your favorite thing about your family?
BS: We all step in to help and each person is willing to do their part to make sure that his success is our ultimate goal. Even my daughter (though she won’t admit it), makes sacrifices to make sure her brother feels loved and has the opportunity to thrive. She is one of his biggest cheerleaders. While she can be strict with him, she always makes a point to make sure he is ok. At one point, we all spent time “babying” him and assuming that he couldn’t. Once we decided as a family to stop being a roadblock, he really showed us all what he is capable of conquering.
EC: That we know and understand that we are on this journey together and I wouldn’t have it any other way.
DM: We have a lot of fun and do a lot of memory making together.
JG: My family is amazingly supportive and understanding.
What makes you most proud to embody the role of fatherhood in your family?
BS: I always wanted to be the father that I never had. I wanted to be loving, helpful and supportive. It was important for my children to know that they could always depend on me, and I wanted them to always see me as their biggest role model.
EC: That my wife and I together are able to give our two kids the one thing we never had: two loving parents raising them in the same household.
DM: I get to support the people I love in the way they need and try to teach them the right way to love each other and others.
JG: I take pride in attempting to lead by example.
