Co-Parenting When They Don’t Accept the Diagnosis
Telling the Truth to Heal
One of the most frustrating parts of my caregiving journey has been co-parenting. I do not typically discuss this topic because after 20 + years it is still a sensitive area for me and one I often find myself struggling through. If I am completely honest, I struggle in this area more than I struggle with other areas of the caregiving journey.
It is a struggle because I want to protect my kids, especially my son.
As I scroll online and follow various platforms similar to my own, I noticed this conversation was missing. And maybe I noticed it was missing because Spirit was nudging me to speak. Then I noticed a platform that I follow, Autism in Black, will be hosting a Couples & Co-Parent Virtual Summit next week. I knew with confidence this was my que to share my experience and what has worked or hasn’t worked for me.
Shame is what has kept me from sharing my story. I felt ashamed about the failed relationship with my kid's father. I would even feel angry and upset about the battles that would often occur. I felt ashamed because nearly every week I was experiencing difficulties with their father. And when I would try to talk about my frustrations with people, I felt they were tired of hearing about the immature stuff that was occurring. So I decided to keep these co-parenting battles to myself.
I believe that by telling my struggles, I am healing this secret battle but I am also helping someone else. Telling our stories is liberating … we don’t just liberate ourselves but we also liberate others from carrying the same isolation and emotional burdens.
Why Some Co-Parents Struggle to Accept the Diagnosis
Receiving an autism diagnosis is an emotional experience and how each parent responds is going to be different. I knew in my heart something was different about my son, so when I received a diagnosis, I was relieved that I had answers and could get the help that I needed for him. However, this is not the truth for many parents. We are all wired differently so our responses to various things we encounter will be different. I was a parent that immediately sought out support and services. There are some parents that grief, uncertainty, fear, shock, and lack of understanding impact their ability to accept a diagnosis. Autism is a life long condition. It does not just go away. We can’t pray it away. There is no medication to cure it. So, hearing that your child has autism can be shocking and fearful. Questions about what the future may look like can begin to flood you. Hopes and dreams for the future can feel impossible and weigh down on you.
It is also important to understand how culture and misunderstanding can influence acceptance of a diagnosis. Many marginalized communities have a huge distrust of medical professionals and systems due to historical racial trauma. These systems and professionals have in the past and continue to have biases in practices and diagnoses. I have heard many say “they love to medicate and label Black kids”. Which is why there is such a resistance. I want to say that improper diagnosis absolutely exists. As a therapist, I see it often and throughout my schooling, I’ve read and learned about it. That is why I am passionate about educating the Black community on systems and supporting our kids. But with education, we can ensure that we are connected to the correct professionals and get the support that we need. There are teachers, specialists, doctors, and organizations that have a deep passion for marginalized communities. Not everyone is out to get us!
Fear, guilt, grief, misunderstanding, and cultural stigmas are all common initial reactions, however, what happens when 3, 4, 5, or even 20 years goes by and the parent continues to struggle with accepting the diagnosis? This is denial.
My son is 23 years old. He will be 24 in September. If you have followed me for sometime, you will know that I started having concerns about my son and having him involved in intervention services when he was about 3 years old. He was finally diagnosed at the age of 5. I have been on this journey for 20 years. And for those 20 years, my son’s father was right there and was made aware of every concern and appointment. Maybe in the last 9 years or so, he acknowledged he has autism. However, a full understanding of autism and how it impacts our son is an area that he continues to ignore. There is such a resistance to not only myself but schools, doctors, and any professionals that are on our son’s team.
Ignoring the advice of doctors, specialists, the other parent, and other professionals on a team is counterproductive. This kind of behavior often stems from denial—a refusal to face a difficult truth, like a medical diagnosis or the steps needed to support a child’s wellbeing.
The Emotional and Mental Toll of One-Sided Care
Parenting a child with autism requires a lot of time and attention. I have supported my son for several years with doctor appointments, specialists, battles with daycares, and advocating to get him the proper education and support in school. Many of these appointments I attended on my own but I would inform his father of the outcome of these appointments. He did not trust doctors, especially when medications were introduced to the conversation. He felt that our son was not supported correctly - despite the doctors, therapists, and specialists saying the same thing. I can recall pleading with him that our son has been in several daycares and schools and is experiencing the same concerns. Something is wrong. Tough discipline was not the answer. He needed something more.
I felt unsupported. Stressed. My son was getting kicked out of daycares and his father just did not get it. I was hospitalized due to the level of stress and lack of support. I left that hospital and vowed that with his support or not, I was going to get my son the help that he needed.
It is not uncommon for parents to experience stress and loneliness while raising a child with a disability. It is difficult to carry these emotions. It is even more isolating when you’re in a relationship with someone and feel as though that person is not listening to you and does not share the concerns that you have. I even recall moments when I questioned myself and if I was making all of this up!
What Got Me Through
Here are some tips that I have used to navigate this space. I will admit that I still find myself frustrated even though my son is an adult. Some of these tips are still applicable to honestly keep me grounded when I am heated.
Prayer
I start every day with prayer. Asking God to give me strength to be the mother that I need to be. Give me wisdom with decisions and discernment about what battles required me to fight and those that I needed to release. I also prayed that the love and structure that I provided to my son and that he received in school would carry him through those bi-weekly visits. He did struggle at times. And he did require a few days to get back into the swing of things. But over time and as he got older, he was able to adjust with minimal regression.
Legal Custody
Getting a formal visitation schedule helped tremendously. Before that, his father would show up randomly to pick him up—no warning, no coordination. I tried to explain to the police and daycare staff that this disrupted our son, who has autism. In Ohio, an unmarried father doesn’t have legal rights without court orders—but police and schools often don’t want to get involved. I was exhausted. So I filed the paperwork myself. Sometimes arguments can be avoided by putting things in writing.
If you’re married, this step will not apply to your circumstances. I would recommend counseling or therapy to navigate these situations.
Open Invitations
Keep adding that parent to contact information for the school and doctors. Continue to invite the parent to appointments and meetings. Do not stop offering an opportunity for the other parent to gain an understanding.
For the first few years after our son was diagnosed with autism, I invited his father to IEP meetings, appointments with neurologists and psychologists, and other matters related to his care. He attended a few meetings but eventually stopped attending. After a few years, I made the decision to stop sending the invitation - I know I made an effort - he cannot say that I didn’t. His contact information remained on school and medical records if they chose to invite him to a meeting.
Therapy
Family therapy can be helpful for parents and siblings to help improve communication, develop an understanding of the diagnosis, provide support and education, and to help the family with strategies to cope with the challenges that may come along with autism.
We attempted therapy—family therapy —trying to find common ground. It didn’t work. But we tried, for the sake of Zion and his sister.
Support Autonomy
It was important for me to allow my son and his sister to make their own decision about the relationship they had with their father. I support my son in making his own decisions. And sometimes, I don’t agree with choices that he makes.
I have chosen to walk him through his rights and discuss how others should treat him. When safety was at risk, I stepped in and said, “We need a break from visits.” But otherwise, I give him space to choose.
Check Myself
This one’s big. I constantly check my own thoughts and feelings. Am I acting out of pain or frustration? Or am I focusing on what’s best for our son? Therapy helped me unpack this and continue showing up with clarity and intention.
You Are Not Alone
I know my story doesn’t apply to everyone. Every situation is unique. But I hope by sharing how I navigated this, someone else might find strength, strategy—or even just a reminder. If you’re in this situation—navigating caregiving while co-parenting with someone who doesn’t fully accept your child’s diagnosis—please know that you are not alone. This journey is hard, and your struggle doesn’t make you weak—it makes you human. Every story is different, and there’s no single “right” way to do this work. What matters most is that you continue to show up with love, even on the days when it feels like too much.
If any part of my story resonates with you, I invite you to share your own experience in the comments or reply directly.
Your voice matters here.