Belinda Fries: Receiving a Diagnosis After Your Child

Do you prefer person-first or identity-first language?

I identify as autistic. For me, being autistic is having a different brain, so I feel it through and through and it spills into every aspect of my life. Being autistic is not only my identity but also a culture and community I have embraced.

How old were you when you received your autism diagnosis?

I was 35 when I first started to learn about autism and suspected I was autistic. I was 36 when I started to pursue my diagnosis and 37 when I officially received it. Like many late-diagnosed autistics, I started researching and reading about my child. Through my research, I also realized I had an opportunity that some adults do not: I had the means to access a diagnosis.

What prompted you to pursue a diagnosis?

As I got further and further into pursuing a diagnosis, the reasons started to stack up. The number one reason was for my own advocacy for myself and my children. I’ve always had a hard time getting medical support and advocating for myself, and I knew getting a diagnosis would help me be more confident in pushing to get myself some support.

How did you feel when you received your diagnosis? Did it change your understanding of yourself?

There were so many feelings when I received my official diagnosis. Deep down I already knew, but it’s a different feeling seeing it written down on paper. The first feeling was happiness because for the first time in my life I felt heard and validated. The second was hope, for the future and hopefully being a part of the change about how we view the neurodiversity model. I also felt anger and sadness as I thought back to my childhood and watched it through a whole new lens. Getting to know other autistic adults in some online groups was helpful for me because I knew I wasn’t the only one with so many thoughts and feelings to dissect.

The diagnosis changed my understanding of myself in so many ways. I looked at myself in a whole different light, and instead of being hard on myself, like I have been my entire life, for once I was able to accept who I am and be kinder to myself. It felt good to learn more about self-compassion. I used to think everything was my fault or my responsibility to fix. I was extremely judgmental of myself in many ways, like why I wasn’t able to keep up with the busyness of others without feeling so exhausted all the time, missing social cues or jokes (and being scared to ask for an explanation), feeling anxious in social situations. The list goes on.

It was learning about compassion that made me look at all of these things in a different way and taught me to be easier on myself because at any given moment I was just doing the best I could at that time. Even when I don’t understand parts of myself, compassion makes it easier for me to take steps to understand the why.

What are some of the challenges you’ve faced as an autistic woman?

Employment, learning to be kinder to myself, and articulating my wants and needs. A big one was knowing where to start after diagnosis. On the job front specifically, I’ve always felt high anxiety and stress while working, but I could hide it well. I’ve never worked full time and was hard on myself as a result. Related to that, as a child and now as an adult, many of my struggles were overlooked because I was quiet and internalized a lot. I learned to ignore my needs because that’s what everyone around me did.

What are the most positive aspects of being on the spectrum?

Finally finding my voice, being able to find community, and taking my health back.

Finding people to relate to and understand each other is something every person needs. We are all social, just each in our own way, so it is awesome to find others who socialize or experience life like you!

Now, I look at my physical and mental health differently and have adjusted life accordingly. Through my diagnosis came the knowledge of my high anxiety and low muscle tone. Growing up, my anxiety was labelled as “you are just excited,” or “it’s just a little nerves.” I lived in a high-anxiety state most of my life and wasn’t able to label it myself. Now, I know what my anxiety looks like and I have it under control and feel a lot more confident about it. A trainer is helping me regain some muscle strength in a way that can be monitored, and for the first time in my life, I feel stronger: mind, body, and soul.

What advice would you give to adult women who think they might be autistic?

You are perfect the way you are. You are about to go on a journey and there is no right or wrong, feel all the feels and enjoy getting to know parts of yourself you didn’t know existed. Reach out and find your community to learn more about yourself. Now, there are many different groups and autistic adult advocates online, you will find the ones that will speak to you and your journey. Lastly, research and find a therapist or coach. My life has changed so much by having the right guides in place.

What advice would you give to parents of autistic girls or related diversabilities?

Learn as much as you can from other neurodiverse adults, especially those who have experienced being a neurodiverse female. There are many books, podcasts, or autistics and neurodiverse-led groups on Facebook. First-hand experiences are so important because that’s how we learn that how we do things aren’t wrong, they are just right for us.

Are there any books, websites, or other resources you’d recommend for women and girls on the spectrum?

There are all kinds of resources available to suit all kinds of people.

I loved two books in particular: “Divergent Minds: Thriving in a World That Wasn’t Designed For You” by Jenara Nerenberg, a late-diagnosed entrepreneur who talks about the lost generation; “The Edge of the Playground” by Mary Lynn Ackerman Willis and Mikhaela Ackerman, follows an autistic daughter and her mother from childhood to adulthood.

Psychotherapy has helped me immensely. I use TMG consulting on the coast through Zoom.

Groups on Facebook I have found helpful are Autistic Women Support Group | LGBTQ+ Inclusive | Safe Space; Mums on the Spectrum; and Redefining Autism – Neurodiverse Families in BC.

A podcast I recently enjoyed was Mind Your Autistic Brain, hosted by a late-diagnosed female with all different types of guests talking about their neurodiverse journeys.

On Instagram, I follow @aspirationautistic, @thisautisticmama and @socialautie. There are just a few of the trailblazing, autistic women who are making our world better for our future generations.