Open Topic, Reflections

The Great Regression

As I concluded in this week’s Reflections post, autistics across the spectrum are enduring things that seem like we are at times reversing the clock from where we have come back to the way things were. I used to be in what was the dark ages and have been through so much prior to and during my knowledge of autism that it can sometimes be the fuel that keeps me going in my journey.

What has seemed to have been spearheaded by the onset of COVID-19 over two years ago is what I have called the great regression in the autism community. Many autistics have regressed to some degree because of regional shutdowns, closure or elimination of various services, particularly those that require more care than others that have autism and other needs. While more recently there has been more of a focus on community integration and employment and while I agree that is a great thing, it must be understood that autism is a spectrum disorder and in part because of services that were once their being no longer, those needing more care and living with family has caused more issues for not only the individual themselves, but the family has been further exhausted as well and as such it can be tiring. 

Additionally, as I have stated previously, being offered my current home was the saving grace that prevented me from ending up away from my family. After being independent for 2 years prior having to realize that there could have been a possibility of that not happening again wasn’t ideal and the dynamic between myself and my parents were further strained, and having my world turned upside down, as many across the autism spectrum had during the pandemic only made things further complexed.

Yes, I have regressed some skills as a result of the pandemic, mostly because of the world being the way it was and having to go through so much change that I guess is why I sympathize with both autistic individuals and caregivers alike because I had a short walk on that path and I other than following up on the platforms that I have access to known how challenging it is for them. 

I know in 2020 that my parents drove as far as they could for the day and returned because they had been strained to the limit. I couldn’t understand why I was not allowed to join them on a trip, especially because it was to places that we shared interests in. It made me angry and because of being isolated from the rest of the world at the time and their diligence to plan to take a day for themselves when I had other necessary commitments, I now realize that they had gone through so much in the past several months, not only with the issues with the demise of my independence, but with the pandemic and the constant being confined under one roof for day in and day out that when things started to open up just enough, while I am able to be independent, they had to get away while they could in order to protect their relationship and well-being.

With that being said, you can say that why I know what autistics and those that are in the trenches are going through is an understatement. I know that they are hurting and while the world has opened up for most of the world, autism still keeps many from enjoying the life that they once did. It also doesn’t help that even services, if they are approved, if needing staff can be nothing short of a miracle as the world has a similar issue with all labor these days. Even more so, this is felt in our staffing issues within the school system as well, thus not meeting the needs of students of autism and other challenges. Most times when the staff needed for individuals is not available, they are unable to be educated properly. While the educational realm is nothing short of a challenge, being educated at the level has been further compromised as a result of the pandemic.

Therefore, we as an autistic community must understand that we must not be unsympathetic of what others are going through because I for one know that it is no picnic and the last few years haven’t been easy on the autism community. Many are still struggling to make it day to day and even sometimes hour to hour. They do it because services may not be available to meet their needs or they know of the dangers of the outside world. Whether or not, it is what is what they have to endure and as such, should not be bullied or ridiculed for having to endure the challenges necessary.

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