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fatherhood and autism

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Fatherhood and Autism: Words of Wisdom Part One

Fatherhood is a journey filled with both wonderful moments and significant challenges, highlighting the invaluable role that fathers play in their families. Fathers provide protection, guidance, stability, and support, serving as pillars of strength.

This month, in honor of Father’s Day, we asked four remarkable fathers who have children with autism to share their experiences with us. The result: two blogs in which these dads offer valuable insights into how their parenting journey has been enriched by their autistic children and the struggles and triumphs they have experienced along the way. Let’s delve into 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 using their initials: BSEC, DM and JG.

 

About the diagnosis

 

What were your initial reactions or emotions when you first learned about your child’s autism diagnosis? How did you and your family cope with this news?

BS: My initial reaction was sadness because I knew from working in the field that it can be challenging to navigate through dealing with a new diagnosis. Teaching him how to navigate through life while protecting him from the cruel world was the ultimate goal.  The household was sad and a bit worried for his future, but I knew it was simply something we had to deal with. We immediately shared the diagnosis with extended family as we wanted as much support as possible. Luckily, family has remained supportive over time.

EC:  My initial reaction and emotions were quite negative… I didn’t truly know what autism was or what it meant… In that moment, when you are given confirmation that your child is autistic, I was afraid of the unknown, what it would mean for my child, afraid he would grow up in a world already filled with problems and not configured to accept or include him because he wasn’t “normal.” I was angry that this happened. And then finally, helplessness that you don’t have the means, control, or power to change this outcome. As a parent, one of my goals was to give my children the things I didn’t have, meaning a chance to be successful in life with two loving and supporting parents in the household. For my child to be diagnosed with autism, I felt like he didn’t have a level playing field.

DM: I knew it was coming, but it was still something very hard to hear. In those moments, all the dreams you had shift, and you just want your child to have the most successful life, and you wonder if they’ll ever have friendships or enjoy all the things you imagined for them.

This was not our first diagnosed child, so we dug in and found the resources needed to support our son. It was hard, and my wife and I supported each other through the process because we refused to let the stress that could so easily divide us win. Instead, we united, and we did everything we could to watch him thrive.

JG: Honestly, it was surreal. The best I can explain it was that it was a mix of emotions between helplessness, anger, and panic. My family was supportive but also somewhat in denial.

…all the dreams you had shift, and you just want your child to have the most successful life…

What are some of the most significant challenges you have faced as a father of an autistic child, and how have you navigated through them?

BS: Outbursts have been a challenge, along with not knowing what will trigger him and how to deal with it if it happens in public. With surface interactions, most people can’t tell that he is on the spectrum. Because of this, we deal with the sometimes judgmental looks related to why we are not “disciplining” our child during those times. With many years of experience working with children on the spectrum, I knew I had to learn what triggered him and teach him how to express himself differently.

EC: The hardest thing was acceptance. I have spent my entire life and career solving problems and it took me years to accept the fact my child having autism was not a problem I could solve and instead approach it from the standpoint of what can we continuously do to provide the means to support him in his development… When you are first going through it, not only are you filled with sadness and grief, but there are other emotions like embarrassment and anger at the way people look and just stare at your child like some kind of science experiment… I got sick and tired of people’s expressions and judgmental looks, and I transitioned to focusing on my child and his well-being. What also helps is when your child eventually reaches and achieves milestones. That gives you hope and motivation to keep pushing through the challenge.

DM: Having patience has been my biggest challenge.  I have learned that I don’t always succeed, but I try to be more aware of my level of patience and remain calm when I don’t want to on the inside.

JG: I am very fortunate that my son is a fairly high-functioning autistic adult. Understanding how his limitations affect him and others has been a significant challenge. His limitations are not always obvious.

 

Were you influenced by stigma and shame when coming to terms with your child’s autism diagnosis? If yes, how did you manage to move past it?

BS: There was no stigma nor shame. Again, children on the spectrum are what I know. I have experienced so much over the past 26 years. I have had a heart for this particular group of children who have played a huge part in who I am today. I wanted my son to always know that he is loved and capable of amazing things. That same love would not allow me to feel shame.

EC: Yes, because as I mentioned, I was very embarrassed and ashamed because I was afraid of how we would be viewed by society. Honestly, I was also angry and upset at myself for being embarrassed and afraid and caring about what other people thought. At the end of the day, I cared more about making sure my child had every means of support for him to develop, but in your mind you’re constantly afraid thinking how is he going to do that in a world that doesn’t do enough to accept people like him? As time goes on, things slowly get better, but in my opinion, despite the large number of people and families affected by autism, we do not live in a world where there is full acceptance or the means to fully include autistic people… Eventually, as our child made progress and we could focus on circumstances and environments where he was included, I put my focus and energy there, and stopped caring about other people’s opinions and the environments where my child wasn’t.

DM: No. I think there were uncomfortable moments, but nothing shameful of a stigma. I think whether you do or don’t accept autism, some of the public outbursts are still uncomfortable.

JG: I am not going to say influenced but yes, affected by the stigma for sure. I am not sure you ever move past it, but you do learn how to cope.

It is hard, very hard because every child with autism is different and there is no guidebook or manual to follow.

Can you help shed light on the lesser-known challenges faced by fathers of children with autism when it comes to raising awareness among others?

EC: It is hard, very hard because every child with autism is different and there is no guidebook or manual to follow. Some things your child is going to be able to do, some things he might not figure out how to do until he’s much older than other kids; some things, particularly if that child is non-verbal or partially verbal like our child, he might not be able to do at all and that is hard…

I also think, inside the home, especially for fathers, it is critically important to remember not to leave your wife or your partner hanging and feeling like they are taking on this challenge all alone. I can’t stress enough how important that is…

DM: For me, it’s some of the more personal challenges that I watch my son face.  I worry about his performance in life. If you’re looking at a sports scenario, he is unable to participate in the same way as other children, and I see that struggle for him. I wish others understood that and his unique needs.

JG: I have a son. There are certain things as a father you would like to pass down to your son that make the father-son bond special. Translating those life lessons and experiences can be difficult.

 

What advice would you give to other fathers who are raising autistic children, based on your own experiences and learnings?

BS: Build a village and create relationships. Research and remain open to learning. Try new concepts with your child. Nothing is 100% but start somewhere and do what works for your child. Don’t focus on the milestones that they have not met yet. Instead meet your child where they are and let them live out their full potential. They may not need full support in all areas. There will be things that they thrive in, so shift your focus to where it is needed. Every kid is different, and no autism journey is the same.

EC: Number one: don’t lose hope. It is very hard in the beginning, and I imagine more fathers probably feel like I do where you feel you have an obligation first and foremost to protect and second to fix what’s wrong, and how in the world are you supposed to protect and fix this? Been there… and the answer is you can’t and you can’t approach it like that. This is a marathon, not a sprint, and a marathon in which every child is different. There are going to be many positive things and milestones your child will achieve—keep your focus on that. In many cases you’re going to have to replace the word “protect” with the word “support” and that also means supporting your wife and making sure she doesn’t feel alone. This was really hard for me to figure out in the beginning when I thought I would have to do everything for him because he wouldn’t ever be able to do it for himself. I stopped even trying to teach him and would just do it for him. Slowly but surely, I realized with enough time, patience, teaching, and therapy, he learned how to perform basic skills for himself. Finally, it is not important what other people think if they are not supportive or present in this journey with you. Therefore, do not worry, be embarrassed, or feel like you have to keep this secret and hidden. Don’t waste your time worrying about the opinions and judgment of others that have no say or care in how you raise your kids or provide for your family.

DM: Be patient. Meet your child where they are. Understand that emotions can be so big and so strong, but often it is temporary and a reaction.

JG: Be very proactive in getting help. Sometimes we want to do it all ourselves but seek out resources. Allow yourself time to rest and be proactive about your mental and physical help.

 

Support for fathers

 

Navigating the world of autism can be difficult. How do you currently prioritize self-care and your mental health? What has been helpful and where do you struggle?

BS: I take time to relax and unwind by sitting at my fire pit or going fishing. I find that calmness and peaceful scenery is helpful when trying to refresh. Since I now work a full-time job along with two part-time jobs, it’s easy to feel drained. I understand the importance of recharging so that I can continue to show up for my family.

EC: I would say like families with kids in general, you can benefit from having a village, meaning you have other family members or friends that from time to time can allow you to take a break or allow mom and dad to have a date night and alone time. This is natural for any family and comes up with an additional set of challenges for autistic families. Having an older, non-autistic child to help with the autistic child has been a big help (but also comes with challenges) and giving each other breaks to take a nap while one person watches the kids has helped, but neither of these things are by any means ideal or perfect scenarios and to be perfectly honest, in times when you are really tired or mentally exhausted from work or something else, I’d be lying if I didn’t say sometimes you just say a prayer that your kids will behave, not hurt themselves, or destroy your house.

DM: I do a lot of self-reflection on my drive to work.  My church has been a crucial part of my life, and my men’s group through church provides me with fuel I need.  My wife and I try to plan weekly dates to promote self-care together.  I don’t know that I really have an area I struggle in.

JG: You have to be very mindful and proactive when it comes to your mental and physical health. You need to establish a circle of trusted friends and family that will allow you to take breaks

 

Impact on marriage/partnership

 

What were some of the biggest sources of stress or tension that emerged within your marriage/partnership as a result of your child’s diagnosis? How did you and your spouse/partner work through these challenges together?

BS: Figuring out a balance of how much support our son needed was a challenge. We struggled with how much was us being supportive versus how much was us “babying” him and preventing him from reaching his potential at earlier stages. If anything, his diagnosis brought us closer together as we were both hyper-focused on meeting his needs.

EC: Maybe the biggest thing is supporting each other, or more specifically, me supporting my wife. I didn’t realize it at the time, but there were too many instances when I was not being as supportive as a father as I should have been. Much of that was because of my full-time job, but a lot of it was because I didn’t know what to do. I didn’t realize how much stress that was putting on my wife and how alone it made her feel. Eventually it became clear, and I made changes for the better which helped our relationship a great deal, but that was very challenging and stressful for us.

DM: My wife refused to leave home. She refused to allow me to be alone with our son. She was scared there would be a meltdown and she would need to be there. I had to be very firm and force her to just drive around for a while and assured her that nothing would happen that I couldn’t handle. That was hard for her and for me.

JG: The biggest stress was the anxiety of constantly questioning if you were doing things right.  Financial concerns were most definitely stressful. Alternative medicines and therapy were very expensive. Not sure how we worked through it other than trying to be supportive and focused on the child.

This is the time to turn to one another, not away from each other.

Reflecting on your journey, what are some of the most significant lessons or insights you’ve gained about maintaining a strong and healthy marriage while raising a child with autism?

BS: I would share how important it is to be active and show your wife and children support no matter what level of support is needed. How you lead as a father will determine how your household embraces the situation. Also, show yourself and your spouse grace while navigating the good times and the bad times alike.

EC: That no matter how challenging your situation dealing with autism is, remember that children feed off what they observe at home and in the environment created by mom and dad. This has been and will always be critically important in any child’s development. Children learn and develop in the environment you establish and there is no substitute for two strong parents in the home nursing, caring, teaching, providing, and supporting their children.

DM: You have got to make time for one another! It is okay to take a break. It is important to make your marriage a priority and encourage one another to practice self-care. This is the time to turn to one another, not away from each other.

JG: I would say, despite if you are married or co-parenting, the best insight I could give anyone about being the parent of an autistic child is to keep in mind what is best for the child at all times, and you will be OK. Personal feelings often have to be put aside.

 

Coming to terms and hopes for the future

 

How do you come to terms with the fact that as a father, you may feel compelled to solve the problem, even though autism is not something that can be fixed?

BS: He is loved regardless. All I can do is help him and teach him so that he has the resources necessary to gain independence as he gets older.

EC: This question goes to the very core of who I am as a person and something that even to this day pulls at my heart strings. My son started displaying signs of autism at around 15 months old and was unofficially diagnosed at two years old. He is now seven and I can probably say that it has taken me almost that entire five-year span to accept the fact that his diagnosis is not a problem to be solved, but instead it is who he is as a person. How do I come to terms with it? Honestly, I don’t know that I will ever come to terms with it 100%, but the vast majority of me has come to terms with it with time and patience. Previously, when people asked me about my children, I would avoid the question, or I’d find some way to speak around it, or I hesitated to take my kids out in public, or not being able to tell people the truth about why I was having to leave work to take care of a situation when your child did something that almost hurt himself… I think at some point I just got tired of feeling like I was keeping this secret that I couldn’t talk about, that I couldn’t share with anyone because I kept hoping some miracle would come or some medical breakthrough in science would come, or that somehow we’d figure something out that we never figured out before, or one day my son would wake up to what society sees as normal. At some point, I just got so tired of it all that I just let it all go. I remember being at work in front of a large audience, nearly everyone who worked in the department, and I was asked a question about one of my biggest challenges. In an instant, I just decided the heck with it. I put my situation out there in front of everybody and I just didn’t care anymore what the reaction would be.  What I didn’t expect and what really surprised me was that after I did that, a few individuals came up to me in private to share that they were going through something similar and that they appreciated my willingness to be open about it. I think after that, for the first time my guard started dropping and the flood gates opened on my ability to cope and deal with something that was not “solvable,” as I used to perceive it.

DM: We always want to fix it, but in our house, we live by the motto, practice makes progress, and boy, do we see a lot of progress.

JG: I personally have not come to terms with it. No matter what, it can’t be fixed and I am always trying to make the situation better.

…his diagnosis is not a problem to be solved, but instead it is who he is as a person.

In what ways have you coped with the emotions surrounding your child’s future with autism, and what aspirations do you hold for your child at present?

BS: As I have seen him thrive beyond the diagnosis, I no longer feel anxious or worried about his future. I have watched him go from minimal speech, outbursts, and struggling with basic functions to seeing him thrive at the top of his class along with graduating from occupational and speech therapy. I can see his potential to go to college as he is so intrigued with life around him and absorbs information quickly. He enjoys cooking with his mom and helping out around the house, so I believe he will be able to live on his own. The sky is the limit.

EC: I worry about this every day and all the time. I don’t think it will be anything I can stop worrying about. We do the best we can as a family to provide him with services that will help his development and to ensure he grows up in a loving home and environment so that with time he will foster the ability to provide for himself.

DM: I’ve had my moments, and some that broke me down. However, I know that if my child continues to progress, there are possibilities for him that are far more than I imagined at that initial diagnosis.

JG: My aspirations for my son are that he finds as much purpose, independence, and happiness as possible.

 

How has your relationship with your child evolved over time, and what are some of the most rewarding moments you’ve experienced as a father of an autistic child?

BS: From feeling like I had to do everything for him to watching how proud he is now that he does many things on his own has made me a proud father. To see him getting himself dressed, brushing his own teeth, and knowing his routine to get his day started is a blessing. I spent time worrying about how he would make it academically and now I watch him thrive academically in each of his classes.

EC: This is a tough question to answer because I think my child perceives me more as the disciplinarian in the house as opposed to his mom. Mom was more of the go-to person, and I was kind of just someone else in the house who stepped in when he got in trouble. It has changed over the past few years and while mom is still clearly number one, I’m seen much more as Dad, and not just some guy. It has been incredibly rewarding to see him accomplish things like speaking words we didn’t even know he knew, spelling, writing, reading, doing simple math, solving simple problems. Despite his condition and the trouble he causes sometimes, in many ways he is just as inquisitive or even more so than I was as a child, and that has made me very proud.

DM: When I became more aware of what my son’s triggers were and how he needed me to interact with him, our relationship began to blossom. He loves working with tools, so we started doing building kits each month.  Seeing him succeed at things I didn’t expect has been awesome.

JG: I am proud of my son maturing, of his intelligence and his ability to work in a voluntary work setting.

 

What is your favorite thing about your autistic child?

BS: He is funny, has an awesome laugh, and finds joy in the smallest, simplest aspects of life. My son loves everyone and sees no fault. He believes that everyone has a kind heart because he does. I can also appreciate that he is willing to try anything (other than a variety of food). He has very little fear and typically wants to try things, even when they are above his skill level. I admire his perseverance.

EC: That he can figure out a solution to obstacles for things he is motivated by. Even through his autism, he often reminds me of myself as a child and some of the things I used to do as a kid.

DM: His creativeness.

JG: His unassuming intelligence.

My son loves everyone and sees no fault. He believes that everyone has a kind heart because he does.

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.

 

 

The Autism Society of North Carolina provides resources to support individuals with autism and their families. Visit the Find Help section of our website at www.autismsociety-nc.org to learn more about Autism Resource Specialists, local Support Groups, ABA and clinical services, and more.

 

 

 

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