featured image: (from left to right) My dad, Rachel, and me at Disneyland – ToonTown to be exact. Circa 1996
Last week it was my 34th birthday, but it wasn’t mine alone. I have a fraternal twin sister, Rachel. If you’re not up on your twin lingo, it means we are not identical, we came from two different eggs. (My 4-year-old son has recently learned that babies come from eggs, and every time I talk about something I did before he was born he will say “I was there!” because he was “one of my eggs.”)
It’s an interesting thing to be a twin – to never remember a time without the other person existing. I’m sure there’s a lot of psychological research out there about growing up as a twin and the impact it has on your relationship with each other… I’ll let someone else look that up if they want.
My relationship with my sister is very unique, not only because she’s my twin, but because Rachel is autistic.
I think the word autistic can mean a lot of different things to different people. While there are certainly commonalities between people with autism, each autistic person is still unique with their own set of skills and personality traits, so obviously they do not all look or act the same. And of course you may be familiar with the term autism spectrum, which means that there is a range of different levels of traits that people with autism can have.
Some of the signs or symptoms of autism may include things like:
* dislike of physical contact
* difficulty expressing needs
* resistance to changes in routine or surroundings
* intense reactions to sounds, smells, textures, lights, etc.
* difficulty understanding other people’s feelings
* delayed speech or language skills
Again, there’s a lot of information out there on autism, some of it’s outdated, so just try to make sure you’re researching current and accurate information. For example, in 2013 the DSM-5 essentially retired the term “Asperger’s syndrome” and now we would just say a person is on the spectrum or has mild autism. (“Mild autism” is not the proper diagnosis, but it could be helpful in trying to understand where a person falls on the spectrum.) This website seemed like it had good and easy to read information if you’re interested in learning more.
I definitely don’t know all of the technical or medical terms about autism, but I always described my sister as being “low-functioning.” I guess maybe you could use the term “severe,” although that has a negative connotation in my opinion. So what does that mean? Well, it means that Rachel has very limited verbal skills. She needs someone to help her with daily tasks like getting dressed, brushing her teeth, cooking her food… We (my family and I) always knew that Rachel was never going to live independently on her own, she needs more support than that.
While I may not know all the medical specifics or even proper terminology on autism, I do know quite a bit about what it was like living and interacting with a person with autism. I have 18 years of experience living in the same house and growing up together with Rachel (longer if you count our time in the womb).
My goal in the next few posts is to shed some light on what this experience was like – what was it actually like living with a person like Rachel? Obviously, I am coming at this from the perspective of a sibling, not a parent. Parents would have a completely different perspective! (Just ask my mom!) And again, Rachel does not represent every single person who has autism – she’s just one person, and I’m also just one person giving my unique perspective on this topic. However, I hope it will still be valuable to some of you out there.
Stay tuned for Part 2.