Just before the pandemic, I was watching a Canadian national news morning show on television and a wonderful story about a group of parents of children with autism who were starting a support group for Black parents. I listened to the interview and being from the Caribbean, and my face lit up when I heard their accents because it felt like home.

I am from the Caribbean.

I have the accent.

I am connected to my culture, and I so miss the tropical sun.

I have an adult autistic son.

I even had a charity in my community that I ran for parents for children with autism to help us get the things our kids need to live their daily lives — things like tablets to help them communicate, weighted blankets and vests etc. I had since passed the charity along to some younger mothers so that I could focus on the difficult task of raising my then teenaged autistic son.

I had something to contribute. I could share my experiences.

This could be a group for me.

When I saw the news story and heard what they wanted to achieve, I understood where they were coming from. Having a cultural connection and having the immigrant experience certainly helps if you are also a parent of a child with special needs.

Having a group that understands you makes it a little easier.

I decided to reach out to them via their Facebook page as they suggested in the news story, excited to be a part of a group again now that my son was older and living independently. I was looking forward to learning new things and listening to their stories and sharing my experience with my son. I had been through a lot with him, and I might have useful ideas for others looking for answers.

Not a fan of Facebook, I put aside my reservations about the platform and logged into my hardly used account and looked them up. I found them easily and I sent them a private message asking for information on how I could be part of the group even though they were stationed in Toronto and was two hours outside of the city.

In about an hour I received a lovely welcome message from the founder and was told that I could come to meetings whenever I happened to be in the city but could certainly connect regularly on Facebook.

I was thrilled. I was going to be part of something that I could be connected to by more than just autism — I would be a part of a distinct group that would understand my cultural idioms — a group where I could be myself and talk about my son’s autism open and honestly without having to be mindful of how much I moved my hands, or the nuances in my tone that were usually mistaken for anger or upset whenever I spoke before Canadians.

Twenty minutes after I was rejoicing about my inclusion in this group, I received another message from another person — another administrator connected to the group who wrote,

“We just were discussing your membership and we wanted to impress upon you that this is a group for Black and Caribbean parents and their children only. Your son has curly hair, but he looks very fair and you look more South Asian than Caribbean. We are not denying that you are from the Caribbean, but we do not see you as Black or Caribbean and we do not feel that your presence in the group will make other members darker than you feel uncomfortable. Perhaps there is another group you can join. Maybe one for South Asian people or maybe start your own.”

I read the message and shared it with my husband, sister and cousins who were irate. Try telling Caribbean people they are not Caribbean when we are quite distinct.

There are all colours and creeds living in the Caribbean and it is a hell of a feeling being told that it does not matter that your autistic son’s hair is curly; it doesn’t matter that you sound the way you do or that you can really offer good ideas to parents of a similar cultural background to you with younger children with autism and really make a difference in their lives — you not dark enough and your eyes are too slanted. We haven’t met you. We don’t know you, but we know WE DON’T WANT YOU HERE.

Well, I just passed on my charity to two other moms, and I did not live in a very ethnically diverse community so that wasn’t an option. I am extremely mixed race. I am not South Asian, and I if I tried to join such a group as the message suggested, I wouldn’t have anything in common with the members.

But okay, Black and Caribbean Autism Parent Group — message received.

I thought about what I should say to this person.

How did I really feel about this?

I wasn’t really angry.

I wasn’t very upset.

Perhaps I was feeling…I don’t know, numb from the shock of the message?

I do know I felt misled and flabbergasted. I was under the impression the group was for Black and Caribbean parents, so I reached out.

I took some time to process what I was going to say and after a couple hours, I sent a message back to the gate keeper that simply said,

“I received your message. Best of luck to you and your members and I wish you much love and success with your unique and beautiful children.”

My cousins told me I should do something loud about it. Call the network that aired the story, they said. Write something in paper. Blast them on social media — but for what? To get back at them? What good would that do? Why should I jeopardize the other families in the group or the progress they were making with their children because they were able to gather.

To those who loved me , it might have looked like it, but I wasn’t walking away with my tail between my legs. I was walking away because a group l that opens it’s doors on national television and says Caribbean and Black people welcome, who then turns around and says something else to Caribbean people wanting to join; telling them that their skin, and their child’s skin aren’t dark enough, is not something I want to be a part of.

Sure, I was taken aback and yeah, perhaps a little angry by the message but I wasn’t devastated.

At the end of the day, the main focus for me was the children with autism and the obstacles that not only the children face, but their families too. There was no need to make a scene.

So, I bowed out gracefully. I’m in my fifties and my explosive days are over. My power lies in what I do and not in how loud I can bellow. Perhaps this is why it has taken this long for me to write about this experience. For me, this rejection sparked self-reflection — it was a time to make decisions about the topic of support groups and if I really needed to be in one.

As the situation occupied my mind that week, I concluded that the group needed to just be branded as a group for Black parents of children with autism. Black parents and Black children from anywhere — Canada, the Caribbean, Africa, South America — Black with an autistic child.

Done.

No blurry lines that inadvertently extend invitations to other people they do not want sitting among them or sharing space with them on Social Media.

I also realized that I was no longer all about autism.

In fact, I always strived not to be even while raising my children. Having a typical child as well, I ran a 50/50 ship where we tried to see things from our autistic son’s perspective as best as we could, and we helped him come into our world and help him cope with all the sights, sounds, and smells that could be so hard for him to endure.

We encouraged him without forcing him, but we always had high expectations of him, because we knew he was in there, he just needed outlets to bring out who he was.

So, we all got to work to make it happen.

At one time there were four jobs between me and my husband just to make sure our kids had what they needed to get out in the community to participate in the things that would enrich their lives and we worked damn hard to pay for all the extra things our autistic son needed to give him an outlet for his voice, his emotions, and his creativity.

I thought about my autistic son the week I received the rejection message and I realized I didn’t need a group.

My son was an adult living on his own with a support staff to keep him on track. He could cook, wash his clothes, and run his day to day life. He graduated high school and decided against taking part in the specialized College Program at the local campus and instead went straight to work in our community. He was involved in two Special Olympics sports that kept his physically training for both the summer and the winter games, which kept him in the Division 1–3 athlete, which meant he was super fast and competitive. My son can read and write and spells impeccably because I’d been teaching him since I got him to look at me when he was three years old — eye contact — a skill that is so difficult for persons with autism to master. If they don’t look, they don’t learn, and I got him to look at me by thinking outside the box.

My son is a singer, a drummer, and an artist. He took up kayaking five years ago because he could, and he loves it. He is trying to improve his social skills by attending co-ed gatherings and dances. He still has his struggles, but he’s doing okay. You can’t really tell he has autism until you’ve spent about half an hour with him.

My son is happy and so is my family.

We’ve gotten through some very tough times that only the four of us know about and perhaps, I don’t want to share our journey with a group. Maybe it’s best if I kept what we did to help him to myself. Or maybe I can share what we did in other ways. I’m not sure.

As I reflected, I asked myself if I really wanted to give other parents advice. No one ever really advised me. I read a lot, researched everything and I made plans on how to teach him everything he knows, and I made plans on how to get him over the hurdles he faced so many times.

Autism isn’t a one size fits all condition. Every child with autism is different and it is up to parents to look at their child and find those outside the box ways to enhance their lives just like my husband and I did.

Who am I to tell parents what they should and shouldn’t try?

I’m nobody. I’m just my son’s mother and I know him. I don’t know their child.

I also realized, I no longer wanted to sit in what was often a dismal atmosphere. Autism is hard and I guess, the more I thought about being in a group, the more I realized that maybe hearing other people’s difficulties would drag me back to a time I’d rather not think about.

We have moved on from those days as a family. When we reflect on the darker things it’s momentary and often followed up by memories of the more pleasant side of having our special son in our lives. We are truly blessed that he is part of our family.

Being rejected by this group too, was a blessing because encouraged me to take on two very challenging yet rewarding projects in my middle age that I’d put aside for quite some time because I was busy raising my children. With them grown and gone, I suddenly have so much time back to spend doing new things. I speak three languages now and I am busy with my new projects. I don’t need to be in autism central anymore…. not that I ever really was. I think it’s because I saw the difficult times with my son as mere obstacles to what is a beautiful life.

My son has a beautiful life.

He does more in a day than most typically developed people do and he has great purpose and a lot of pride in himself.

I am done.

My boys are independent, kind, generous, respectful, and responsible adults.

We have a beautiful relationship.

They are in a good place, and I have to focus on me now. And I have to focus on the years my husband and I have left together. Our time is important and very valuable to us, and we have to spend it well.

I know who I am, and I know where I’m from and I know how well my son has done under my care, guidance and love.

The rejection of this group based on my an my son’s appearance was good for me. I realized I never needed a group and I certainly don’t need one now to know that the sun does come up after some of the darkest days of living with autism. So, I guess, the rejection was actually a favour — one which I am grateful for because I am in this new phase of my life where I do what I want to do and not what I have to do. I walk in the light everyday because I belong there, and I truly hope the parents in that group will find themselves walking in the light as well.