Rainy Day Thoughts

There is a lot going on in the world in regards to autism. As a family affected by severe autism (now referred to as profound autism) this “should” be a good thing- bringing awareness and hopefully acceptance of our more severe kids.

https://www.instagram.com/reel/DPQyqTHD5-b/?utm_source=ig_web_copy_link&igsh=MzRlODBiNWFlZA==

Tyler Hudson gives a great explanation of the differences between “level 1 autism” (what used to be referred to as Asperger’s Syndrome or High Functioning Autism) and severe or profound autism. While I recognize that autism is a wide-ranging spectrum diagnosis, I find it incredible that certain people on social media who admit they are “self-diagnosed” espouse their opinions on how autism is “awesome” and “fun” and “a super power.” There seems to be a great debate, much of it fueled by political opinion, on whether or not we should be finding the root cause(s) of ASD and if we should be wishing that people with autism can be “cured.” There is also a group of people who believe there IS no root cause, that it is simply genetic, and another group who think the rise in autism is due to “better testing.”

When Tom and I decided to start a blog, and now a YouTube channel, our mission was to share positivity and encouragement for other families affected by autism. If we had started this blog 15 years ago, the tone would have been so different! Josh has come so far, and grown so much, it’s a lot easier to share about our lives today. There have been many, many dark days and sleepless nights, where he has cried or screamed in obvious pain and he wasn’t able to tell us what was wrong. Josh no longer tries to elope whenever he has a chance, but even now when he’s playing in the back yard we still have to be vigilant and keep watch— just in case. For those of you unaware of Josh’s dangerous eloping, here is a blog post describing some scary events. We thank God every day that none of these incidents ended in tragedy the way eloping has for so many families.

https://www.findingfourleafs.com/blog/vacations

As far as autism being a “super power” and how dare anyone wish to “cure” it, I have a lot of feelings on that. I’m not ashamed to admit how many times I’ve said out loud (and in my heart) how I hate autism and how much it robbed from our son and us. We love our son but I can say that we’ve never seen autism as a super power. Autism is a diagnosis. Our son’s “super powers” are that he is loving, he is kind, and he is non-judgmental. It doesn’t take much to make him happy, but when he’s upset we often don’t know how to soothe him because he is primarily nonspeaking. What I might wish to “cure,” are the things that cause him physical pain and what prevents him from communicating with us on how to help.

Speaking of communication, we dove into the deep end of the pool of Spelling to Communicate (S2C). For those of you who haven’t seen our YouTube channel, we posted some videos authentically documenting the beginning of this process.

https://youtube.com/playlist?list=PLaQNQWnieUGwkwmBeCMUJw7ZV1xSbEscO&si=ghZeHvMzjTuL0WLK

It’s fascinating watching Josh get the hang of the motions, and we love hearing words of encouragement from our family and close friends! A couple of “well-meaning” individuals have taken the time to share their opinions about our videos, calling S2C a “con” and leading families to false hope. Whatever, dude. I understand our videos are public, but I guess I always want to think the best of people and I’m genuinely surprised when people are self-righteous jerks.

There are a lot of loud voices trying to make this strictly a political issue, and it shouldn’t be. The reality is, special needs adults just sort of disappear, and are forgotten by society at large. Once they age out of the public school system, they just retreat into whatever lives they’re able to lead. We’re shown high functioning, “quirky” or self-diagnosed autistic adults front and center, as if that is an accurate picture of autism. They are not the same as our severe special needs adults.

One big question out there right now is “does Tylenol cause autism?” Who knows? But really, that’s not the point. The bigger point is that large corporations and organizations definitely don’t want answers as to likely causes of autism. I think some people don’t want to talk about the root cause, because that means we aren’t accepting of autism.

Can’t we all love the PEOPLE with autism, and support those who are searching for answers so that the condition is potentially avoidable for future generations?💚🍀