In the past few years the hashtag and theme of #actuallyautustic have been more present than ever. While for decades the voices of autistics have been dialed down. We must remember that autistics come from many walks of life and sometimes need the voice and support of their family and/or related allies in one’s journey. Therefore, I feel it is important that all voices in one’s journey may need to be heard.
Yes, I get the many facts that the voices of autistics have been discounted for decades. Being an autistic man in my thirties, I have lived through the dark ages, where newly-discovered autistics then being diagnosed as Asperger’s as I was back then, where walking the same minefield as those that were intended to support us. I experienced great trauma in the early years when now we see restraining as a last resort, however this was a common practice in my teens more than most know because I was considered a loose cannon. However, While I have to admit that there are “bad apples” of those in supporting roles, there are also ones who learn from their early mistakes and take the time and learn how to make the care provide be better to the individuals they serve.
The same can be said for families. While my parents don’t totally eye to eye in some of my practices, they are there for me because they know they can be a good help when I am appreciative. I do understand that the family dynamic in everyone is not the same and there can be some pretty tough stuff to process in one’s life. Just as there were difficult parents in the lives of some autistics, there are also some pretty good supporters. I personally feel that their voice shouldn’t be squelched because maybe earlier in their child’s life didn’t make the best decisions. Sometimes, this is where more advocacy and education needs to be brought forth to those supporting newly-diagnosed autistic children so that they are armed with the best tools at their disposal to support their child in need.
I know my parents were my best advocates in my teen years. They lost countless hours of sleep, had to take FMLA leaves from their jobs, and had to fight tooth and nail to make sure their goal for me to be safe was met. Over two decades ago when I put them at my wit’s end they had a end goal to get me the treatment I needed and be reunited with my family. The system had ideas of institutionalization in different parts of the state and country. My parents sought out the avenues to make sure that I got the treatment I needed so that I could be on my journey to be reunited with them. While I did experience some trauma in some years of later events because of the choices they made, they did later admit that they did have my best interest in mind.
When they were doing their research on the newly-evolving Internet on my newly-delivered diagnosis, I was acting out in behaviors not knowing what to do, what I wanted in life. I was not in the arena of advocating for what was needed, simply because I wasn’t in the mind of knowing what to do. Yes, I was hurt by some of the decisions that my parents made about my care in my teenage years and some choices for several decades. However, what if they didn’t make those decisions, where would my life end up? Would I graduate High School? Would I go to trade school? Be employed longer than most autistics? Go and be the best in my major in Community College? Get and keep independent housing with minimal support? Through mainly their efforts and those of others, I can be proud to say that I haven’t ended up in the psychiatric unit for over 21 years. Have I done some things I regretted? Yes, I have! But we live and we learn from our experiences and as someone told me once it’s more about the journey rather than the destination. I am slowly learning to be myself and that is what matters. Regardless, I wouldn’t be where I am today if it wasn’t for my family members and countless allies that played supporting roles in my journey that got me to where I am today.
So, when you want to focus on the living experience of others, please consider the voices of those caring and supporting autistics. Because they are there alongside the autistic person experiencing the journey too and they may also have the experience and it may be from a different perspective, but please don’t discount it as it may help you someday!