I was 5 years old when my parents had my brother, Mike. I was excited to have a brother. I was probably about 8 or 9 when my brother was diagnosed with autism. The diagnosis didn’t really mean anything to me. My brother was my brother. Adding a label didn’t change him or me. Over the years, the diagnosis was adjusted to the more specific PDD-NOS (sounds mysterious, doesn’t it?). PDD-NOS stands for Pervasive Developmental Disorder – Not Other Specified. To state it simply, my brother has a high functioning form of autism. In fact, he has slightly above average IQ. He has a phenomenal memory (he can regurgitate entire TV shows or movies for you), a huge vocabulary, and an interest in other cultures and languages. He has difficulty with social skills, making emotional connections, and understanding non-verbal communication.
I have always loved my brother. I’ve always acted more like a second mom to him (sadly for him). I have so many great memories with him. Chances are we never would have had these moments together if he had a “neurotypical” brain.
I remember the summer when he had outgrown velcro shoes. I think he was somewhere between 10-12 years old. It was my mission that summer to teach him how to tie shoe laces. Boy oh boy… was that a long summer! But the good news, by the end of that summer, he could tie his own shoes.
During the summer before he started high school, I was sarcastic with him everyday to teach him how to recognize sarcasm. I was afraid that he wouldn’t be able to survive high school without that particular skill. This is a skill he has still not 100% perfected, but he knows to always be on the lookout for sarcasm and will now often asked people if they’re being sarcastic if he’s not sure.
Mike has certain topics of interest. One day, he was following me around the house providing me with a lecture on one of those topics when I crashed into a glass door (in my defence the door is typically never closed), bounced off of it, and fell onto the floor. I’m laying on the floor, in pain in a couple different spots, and realize that my brother did not even pause in his lecture. I yelled at him for quite a while about that one! Here’s the interesting part. Typically, people with autism cannot apply their knowledge to new situations. However, a couple of months later I was reheating a bowl of rice in the microwave. Mike was again lecturing me on a topic of his choice while he was eating his lunch. As I was taking the bowl out of the microwave, I accidentally dropped it and the rice ended up all over the kitchen floor. Mike immediately stopped talking, jumped up, and asked how he could help. Later that day, I told him that I was surprised how he jumped up to help without being asked to. He replied that there was no way that he wanted to get yelled at again!
My experience as a sibling of someone with an invisible disability is, of course, unique to me. However, I can tell you the following:
- I was never ever jealous of the extra time my parents spent with my brother. I knew that whenever I needed their time, they’d be there for me.
- Learn to laugh. Funny things will happen. Probably everyday. Not every single moment is a “teaching moment.” Sometimes, you just need to laugh when the funny stuff happens.
- Having an invisible disability has its pros and cons. Often people think my brother is just really weird, instead of having a disability. That was really hard for me growing up.
- Sometimes my brother embarrasses me. It’s typically when he belches in public (but I’m guessing this is more of a “guy” thing than an “autism” thing!).
- I was always very mature for my age. Once Mike started school, I realized how different he was compared to his peers. I was always worried that he would be bullied, I would always watch out for him, and I realized at a young age how difficult life can be for some people. It definitely had a huge impact on my personality (and on my career).
- Important milestones become even more meaningful. His graduation ceremonies from both high school and university were both very inspiring and emotional.
- I am incredibly proud of my brother and everything that he has managed to accomplish.
The National Center for Learning Disabilities (NCLD) has a short video on their website about 4 brothers (2 have learning disabilities and 2 do not) who briefly share their thoughts about their siblings. NCLD also offers the following advice to parents of siblings:
- “Acknowledge that feelings are real and create opportunities for open and respectful sharing among family members
- Avoiding comparisons that point to weaknesses
- Make sure to notice (and even celebrate) special abilities or successes
- Do not assign family members to particular roles based on their skills and abilities
- Especially during stressful times, try to find opportunities to laugh!”
Do you have a sibling with an invisible disability? What were your experiences growing up? Do you have any thoughts, ideas, or comments to add to the discussion? Let me know what you think.