Having A Child With Autism Can Feel Isolating. Even More So When You’re A Minority.

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Black. African American. Mixed. Bi-racial. I mourn the loss of another life gone too soon.

I grieve for another family that has to sit by their loved one’s casket. And as we go through the motions again as a country of yet another black life taken too soon. I worry.

Why? Because I am a bi-racial mother of two beautiful mixed-race sons.

I believe that all mothers, no matter their racial identity, fill themselves with worry the moment our precious children are placed in our arms.

We worry about everything.

As infants, we worry about their milestones. First steps, talking and walking. But as they grow, our worries become more complex. Learning to drive, their first broken heart, and what their future will look like.

My worries and fears probably look a little different from the typical Mom.

My boys are both unique in their own way; genes are interesting that way.

They are complete opposites in every way; from their looks, personalities, to their behaviors. My youngest son is fair-skinned, a small button nose, blue-green eyes, and bone straight blonde hair.

He is bright, inquisitive, kind, generous, and thoughtful. And he is also neurotypical.

My oldest son has a sun-kissed glow to his skin, a wide nose, blue-green eyes, and curly brown hair. He is funny, creative, kind and thoughtful.

And he is neurodivergent, specifically Autistic. There are other comorbid diagnoses, but his autism is what makes him who he is and defines our day-to-day lives.

The moment my oldest was diagnosed with Autism, I was relieved.

Because the narrative of him as a ‘bad or troubled’ child disappeared. He was a child who needed help, assistance, patience, and understanding.

It no longer felt like I was an inadequate mother and failing him. But then as we worked, learned, and reached out for resources in our new world. I quickly realized that the majority of our new community was white. I never felt more alone.

In reality, I wasn’t alone, but it felt that way.

Because we were stationed in a small town, at a small Air Force base in Idaho. His doctors were white, the nurses, the specialists, other homeschool families, and therapists. Living on a military base, with its built-in diversity, people from all over the country and all walks of life.

Almost all of the other families I encountered were white, and none dealing with the challenges or concerns of having a black Autistic child.

Then my husband got orders to North Carolina. That changed our world.

It offered the possibility and opportunity for us to leave our small base in Idaho to a wider and I hoped a more diverse base.

But my hopes were dashed when again the only faces we encountered in our medical and homeschool circle were white.

I never shared my fears with them because I thought they wouldn’t really understand.

We participated and attended events but I didn’t really share or open up to anyone for the first 2 years we lived here in NC.

Then I stumbled upon a beautifully diverse family.

They were raising a blended family with neurodiverse children, and they were a lesbian couple. They were a breath of fresh air in the South.

And the primary parent, and the one I bonded with, knew my struggle immediately – how to raise my Autistic son in this world.

How to teach my son how to interact with police, given that the wrong response by a black boy or man could have deadly consequences.

We had in-depth heartfelt conversations, hours, and hours of supportive talks about feeling lost. About how to raise our babies, our children, in this world.

She allowed me to open myself up to more people and try and trust others with this burden and secret fear I had in my soul. Because, you see, she was white.

But she was raising bi-racial children and Autistic children.

Despite our racial identities being different, she had the same fears I did for her children. I needed that. And I will always be grateful to have met her.

Having a child with unique needs can be isolating in itself. But even more so when you are a minority.

When you have little to no one who truly sees your child and even your community continues to mistakenly believe that Autism and mental health are ‘white only’ issues.

We are setting our children up to fail. Because we then allow them to be labeled as, ‘bad, difficult, problem, or angry”.

Minority children more often than not poor, are undiagnosed or misdiagnosed. People around your child only see behavior problems, rather than a child that needs help.

I remember when my oldest was 3 ½ years old, begging his pediatrician to help us. Crying about the weekly phone calls from daycare and severe mood swings.

He told me, “If you were more consistent with disciplining him, you would not be having these issues.”

I was stunned. I wasn’t angry, as I rightfully should have been, instead I felt shame. I was ashamed of being a bad Mom.

I was ashamed of ‘allowing these behaviors’. Those words still haunt me. Because I believed him. I believed this white, young doctor, who had seen my child for less than 10 minutes.

A man who barely asked any questions or follow-up. I didn’t fight for my child until almost a year later.

And I regret that, even now, almost 7 years later.

Because you will always be your child’s biggest advocate!

Let me say that again, YOU WILL ALWAYS BE YOUR CHILD’S BIGGEST ADVOCATE.

No one loves your children more than you.

No one knows them better. You know in your heart that your child needs help. Never let someone tell you or try to convince you otherwise.

I feel lucky now. We’ve been in North Carolina for almost 6 years and my support circle is huge.

My circle is filled with so much love and support. I have a wonderful ABA team, CBT therapist, talk therapy for everyone in our family, and a women-only parent support group.

It isn’t as diverse as I would like it to be, but I find that void filled in my online support groups.

I also know without hesitation that the people surrounding me and my family understand my fears for my Autistic son; who is quickly becoming a man.

Despite my amazing support system, I am still fearful.

My heart is still heavy, my eyes burning with tears, and my soul damaged a little more, by another black body on the ground.

The difference now is, the people around me, we share openly about the current events in the world. I’m comfortable sharing my perspective as a black Mom.

They share their own experiences of bias, malice, and abuse towards their own unique children. And we feel heard together.

We bond and find solace in our differences and shared experiences.

We typically end our parent support group meetings with a quote, something positive to end on and think about before our next meeting.

I will do the same.

“Although people with autism may look like other people physically, we are in fact very different . . . We are more like travelers from the distant, distant past.

And if, by our being here, we could help the people of the world remember what truly matters for the Earth, that might give us quiet pleasure.”

– Naoki Higashida, The Reason I Jump

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