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My Son With Autism and Bipolar Disorder Just Wants to Be Accepted

Busting at the seams and way too full for its contents, this binder signifies 10 years of heartache, thousands of hours of appointments, phone calls, research, emails, notes, documentation — I could go on and on. It is filled with a mom’s desperation to be heard and her relentless persistence to get help for her son. Even then, it only contains his records from the most qualified doctors in the country as experience has taught me these voices are the only ones considered to be relevant and regarded in the medical community.

This binder goes with me everywhere because if there is another thing experience has taught me, it is that parents have little credibility in the internet age of Wikipedia and WebMD. I’ve met too many doctors who know everything and nothing at the same time, who put you in their little box of opinions within the first two minutes of walking into the room and meeting you. No one has to assume we know anything because my binder is filled with experts who do. Experts who have also spent countless hours examining, assessing, testing, imaging and observing my son — experts who have been regarded as the top in their field in the entire world. Even then, my son has an extremely rare condition that less than .05% of children are diagnosed with, so we’re always met with a bit of skepticism at first.

You can imagine how supportive the rest of the world without advanced medical degrees and zero understanding of mental illness has been. Despite this binder of information that says otherwise, society in general believes our son chooses to have behavioral difficulties and is responsible for “turning it off” whenever they deem convenient.

Yesterday, this binder had a brand new addition. After being on the waiting list for an appointment at the University of Michigan for three-and-a-half years, (again, with some of the most respected in the field) our son got a second diagnosis added to his growing list: autism.

I have never been more thankful to add something that society actually accepts as an illness that a person cannot just choose to stop doing. Though his other diagnosis is still just as valid, we do not live in a world where validity equals acceptance and understanding. Our son’s beautiful spirit deserves that. He deserves to be heard and seen and have the help he needs. He deserves not to be bullied relentlessly. He deserves an equal chance at success in life and not to be continually singled out by those who would rather create problems than work with us to try and overcome them.

I have done more to try to help our son in the last 10 years than many parents ever would. This is not boasting, it is a fact that comes with the admission of near obsession at times, a fact that has come at the expense of other responsibilities, relationships, and my own mental health. It began the moment he was born when I noticed something wasn’t quite right. I am the parent that will go to the ends of the Earth for her family and I am screaming from the depths of my soul how much easier this would all be if I had more people fighting with me rather than against me. For so long I have fought to prove my son is more than just a child with a behavioral problem to people who have never wanted to see past their own distorted reality.

My kiddo is socially awkward. He does not understand social cues, struggles to control the things he says and struggles to understand why others find some things he says and does offensive. He wants friends but often has no idea how to be a friend, how to effectively communicate, or even how to understand the difference between negative and positive attention. He has been bullied to the point of wanting to die and he doesn’t know what to do with the kids who are mean to him. He just wants them to be nice and be his friend, but on his terms, because he struggles to understand that other kids have opinions and ideas too.

If you took five minutes to talk to him and listen to him, you would see how big his heart is. He loves so deeply and feels things more intensely than any of us. He is a precious, animal-loving, goofy kid who wants desperately to be accepted and loved and is so misunderstood by a world the would rather file criminal charges against him for words he did not mean than take the time to understand the bullying he was enduring as he said it.

Despite all this, the only thing he has asked to do was tell those kids he was so sorry for what he said because he just wants them to be his friend. In his heart, years and years of being bullied and what the kids did to him didn’t matter. He cared more about apologizing and wanting the kids to understand and accept him because maybe if they really understood him, they would be nice to him and want to be his friend. Dear God, the difference that could have been made if we taught our kids to help those who are different than us… but that is a story for another time and a nightmare that is nowhere near being over for us.

So today, he no longer just has the diagnosis of early-onset bipolar disorder, his binder now includes the official and long-awaited diagnosis of autism and the hope and prayer for better services that this diagnosis suddenly qualified him to receive. My hope is also that with this, people will be more willing to join our village rather than rallying together to burn it down. It may seem easier to be against what you don’t (or won’t) understand but you miss out on the opportunity to know some of the greatest people you could ever know.

This binder also tells our part as parents of a child with mental illness and the lengths it sometimes takes finding answers in a system that often seems to hurt more than it helps. My prayer is that somehow, the story it tells will bring just a little more compassion for our son and so many others like him who may look “normal” but painfully struggle to navigate life with mental illness. I know we are doing the best we can and I believe by the grace of God, things will get better. I may, however, have to get a bigger binder…