Helena Mary Cole

So, I became Catholic without the support of my family – I expected that all along, and yet somehow, it was still hard in its way. But what was even harder was getting diagnosed autistic without their support, especially when it came to my mother.

One thing that people need to know about those of us who get diagnosed autistic later in life: we often don’t have the support of our families, not along the way, not after we get there. I’m not sure how many children there are in the world whose parents refuse to accept that they’re autistic… For reasons I don’t understand, society as a whole is willing to accept a child’s diagnosis more readily than an adult’s. Somehow, autism has become branded as a “childhood thing” in the public consciousness. One of the most prevalent myths about autism is that if a person is autistic, it will get noticed when the person is a child. Of course, that’s not at all true. But there are specific reasons why an adult’s family might be unwilling to accept their diagnosis:

First of all, to quote Samantha Stein, “we don’t tend to see the people we love as disordered – rather, we love them for their quirks.” If you’re too close to someone, you might not notice their behaviour is odd. You might just think, “Oh, that’s just Laney being Laney.” She’s always been that way – sure, it’s annoying at times– but that’s just her. It might not occur to you that little Helena is having a lot of trouble getting on in life because what you see as “adorable quirks” translate into “major communication problems” in the world at large.

Second, the more an autistic adult tries to defend their diagnosis to their family members, the more they describe their many struggles that add up to autism, the more the family members might recognize “I have those problems, too.” Autism, as I said, is passed on genetically. Not everybody is willing to consider the fact that their problems are considered a disability. Words like “disability” and “autism” scare the pants off some people. If you’re autistic because you have X, Y, and Z problems, and they have all the same problems, then… They’re too terrified to go there. Their need for X, Y, and Z problems to be “totally normal” may be very strong. So, they refuse to accept your diagnosis.

Third, our families, while loving us, can sometimes also be the people in our lives who are hardest on us. Your family may have come down very hard on you for your very real limitations. If it turns out you’re autistic, they’ll have to face the fact that they treated you badly for something you couldn’t help. It would be like picking on a disabled person for being disabled. Nobody wants to think they did that. It’s easier to deny you’re autistic.

A good example of this from my own life would be my problems in the employment sector. I’ve always had problems with getting jobs in the first place and in the second place keeping them for more than a few years. I never get a job on the spot at the end of an interview – I get a lot of “We’ll let you know,” which I used to take at face value, not knowing until very recently that this means, “No job for you.” Anyway, my mother was always very hard on me when I struggled to get hired, and I was shocked years later when she confessed that she had always had trouble getting hired herself. I was like, “I can’t believe you used to scold me so badly for this when you had the same problem, Mom, come on, what gives?” Then later I realized she had probably attributed her trouble with getting hired to lack of education, and as I had a B.A., I wasn’t supposed to have the problems she’d had. So, she was annoyed and frustrated. She wanted me out of the house.

But a successful job interview isn’t so much about how well-qualified you are, or whether or not you’re a hard worker. If it were, autistic people would nail it. Rather, an interviewer is looking to see how well they click with you, how well they’re going to be able to communicate with you, how smoothly you’re going to be integrated into “the team,” whether or not you’re the sort of person they want to see around every day. And, well, since autism is essentially an inability to bond in ways that most people expect, and an atypical communication style, many autistic people will find it hard to get past the first interview.

A fourth reason why our families might not be on board with your getting diagnosed autistic as an adult is related to the huge problem in society with too-low expectations surrounding disabled people. Far too many people are shocked when disabled people are found to be able to function in society at all. There’s this faulty idea that disabled people are sitting around all day in institutions, miserable and alone, with a poor quality of life and a grim future. “Oh, you’re autistic and you have a job? Oh, well done. Oh, that’s wonderful. Wow, you’re doing so well.” As if nobody expects an autistic person to be at all functional. Our families might be looking at our past struggles to function well in society and think that, if they allow us to wear the label “autistic,” we’re going to give up the fight, sit down and wallow away our lives. They might see accepting our diagnosis as helping us become that person.

I wish my family understood the hope that getting diagnosed has provided for me, the hope that I will be finally able to function well in society because I’ll finally have the accommodations I’ve always needed to do so. Knowing I’m autistic has not at all inspired me to give up the fight – it’s rather lifted my hopes up to the idea that I can have a successful career, that I can flourish, that my past struggles and failures can be attributed to not knowing about my autism. Oh, no, knowing about it is what will enable me to function better in society than I ever have in my life. That’s the goal and the hope anyway.

Even when I was still seeking formal diagnosis, I could see this. And, even as my family didn’t understand why I decided to become Catholic, I experienced a clash in viewpoint, especially with my mother, when it came to getting my diagnosis. She saw it as an overwhelmingly negative thing; I saw it as one of the best things that had ever happened to me. And as I was getting no support from my earthly mother in the fight to get diagnosed, I slowly on realized that I had a Spiritual Mother to turn to.

As an evangelical Protestant who became Catholic, it took me a long time to really know and understand exactly what the Catholic faith was providing me with, when it encouraged me to have a relationship with Mother Mary. Protestants get taught to think about Mary around Christmas time, or maybe even at other times, but at all costs not to place any sort of importance on her, and her role in Kingdom of Heaven. She’s merely incidental. She’s not needed. Jesus wouldn’t want us to honour her above any other Christian. That’s what I was taught.

I am not here to be an apologist for Catholicism – there are many out there who are better at that than I am. I’m here to tell my story. “When Jesus saw his mother and the disciple there whom he loved, he said to his mother, ‘Woman, behold, your son.’ Then he said to the disciple, ‘Behold your mother.’ And from that hour the disciple took her into his home” John 19:26-27. Like most ex-Protestants, it took some time to realize that Mother Mary is a gift that Jesus gave to all of us, and it is good and right to joyfully accept whatever gift God gives us.

I entrusted the diagnosis process to Mother Mary. I just had this sense that she was near me, watching over me, gently saying, “Leave this to me.” She was going to stand in the place of my earthly mother, who couldn’t be there for me in this time of need. Through the long months of waiting and wondering, I experienced the loving care of Mary in a way that I hadn’t experienced yet. I went to her, begging for her prayers, that I might get the diagnosis I felt I needed; I told her about my worry that I might not be able to get it; I told her about how much grace I’d need to accept possibly not getting diagnosed, or getting misdiagnosed, if that was the will of God for my life.

The gratitude I feel towards her, for her loving care of me at this time, is so strong, that I’ve added her name to my nom-de-plume. I have long planned to publish under the name Helena Cole, but as you can see from my homepage on this website, I’ve added the middle name Mary. Getting my autism diagnosis coincided with another wonderful event in my life, and that was my manuscript getting nominated for “Best New Canadian Manuscript.” When these two things happened in such close succession to each other, I felt like a way forward in life was opening up before me for the first time in many years.

You could say that I could have done well in the writing contest without an autism diagnosis… But it was the discovery of my autism that helped me discover my protagonist’s autism (as I’ve mentioned before), and that was precisely what finally made that particular piece of fiction into something good and beautiful (in my opinion – it’s good when you feel that way about something you’ve written). The diagnosis does feel like the key to moving into a career as a novelist, and no doubt some other day job in the near future.

I think Mother Mary knew that. And she came through for me. My spiritual life, my relationship with Jesus, has been absolutely flourishing in recent months, since my diagnosis. And that, my friends, is always where Mother Mary will lead you.

So, I want to encourage you, if you’re Catholic and autistic, and your family is refusing to support your diagnosis, remember that you have another Family. Do not be quick to cast off your earthly family over that alone.  I can’t talk about my autism with my mother because the topic is always so explosive between us. I’ve learned to avoid the subject. True, it’s sad and my relationship with her has suffered because of all this. I am not as close with her as I once was. But she’s my mother. She’s getting older and she needs me right now. One day, my relationship with her will be healed, if not in this world, then for sure in the next. Just because she can’t accept my autism, for the reasons I listed above, doesn’t mean the relationship is worth dumping. I am able to see all this from her perspective, and I hope her perspective will be transformed one day. But that might never happen, and I also have to learn to accept that.

It’s a complicated thing.