Coming to terms with a Rare Disease diagnosis and Autism
When you find out that your family is going to be growing by two more hands and two more feet, you start daydreaming about all of the “perfect” memories, right? You start to think about all the peaceful nights, the cuddles, endless love, and that precious little face. But once a physician comes in with their head down to tell you that they found something on your scan, or when you start to see your child behaving differently than other children his/her age… your radar instantly goes up.
The thoughts start racing in your head, how will he grow up? Will he live with me forever? How many doctors’ visits are in our future? What even is autism and what does it mean to be on a “spectrum”? As parents or caregivers, we know that we’ll love this child endlessly, but we worry about what is in the store for their future, right? Well, you’re reading this from a mother who firsthand experienced ALL of these mixed emotions.
In my opinion, it is okay to grieve when you get a diagnosis for your child. Some of your daydreams will just stay dreams. There’s a saying to “feel all of your feelings”. And please do so, if you need to cry, go grab some tissues. If you need to just take a walk to process everything, do it. But I am here to tell you, that autism is not a dreadful diagnosis! I bet you’d never read that considering there are many stories or articles out there that tell you how people with autism can be aggressive, anti-social, obsessive, etc. And although some of those traits can be true, autism unlocks a door of uniquely beautiful traits and characteristics that I could never have imagined until I cared for someone with autism.
I ask you to embrace your journey with autism and try your best to step on a positive foot. Of course, after you grieve and do what you need to do to accept this diagnosis (there is NO rush for self-care!) You’ll hear other parents brag about how their child can sing the ABC’s or finish puzzles and is starting to make lots of friends. Sometimes this can make you feel upset or that you’re failing but you’re doing the complete opposite, you’re thriving in parenthood! I tend to brag how my son can spin in circles and not fall over or vomit. Or that his organizational skills are amazing, and if you need a perfect stick from outside, he will find that specific one for you. I brag that my son is so affectionate but shows it in different ways. Sometimes he likes to cling to my leg, other times he looks deep into my eyes and gently places his forehead against mine.
When you look through the eyes of someone with autism, you may discover an amazing journey. Instead of watching tv shows, some chose to analyze how the fan can spin so perfectly and in sync. What 3-year-old do you know that can do that!? It’s not always perfect days, but even a neurotypical family isn’t always perfect. I encourage you to take a deep breath and embrace this wonderful ride you are about to experience by looking at the world from a completely different point of view.
Read our previous blogs from our Autism Awareness Series
- First Signs of Autism Spectrum Disorder in an Individual with Hypothalamic Hamartoma Syndrome
- Differential Diagnosis for those with Hypothalamic Hamartoma Syndrome and autistic characteristics
- Overlapping Characteristics of Hypothalamic Hamartoma Syndrome and Autism Spectrum Disorder
- Parenting from Different Points of View
Read more about blog author Michelle and her son Jaxon: