In recent years, there has been much divide between self-advocates and family members of autistics about the advocating for all autistics. Sometimes when either side is advocating for things that they are passionate about, it must be understood that it is their experience and that everyone experiences things differently as autism is indeed a spectrum disorder.
Over the years while being a self-advocate I have seen the divide become greater between autistics and family members of autistics. When given the forum or opportunity to speak on the issues of importance to them, it can cause clashing between the two sides and result in acts being undertaken that at times can be very challenging. While there are always two (and sometimes the reality) sides of the story, there must be an understanding that it is only the experience of those that are speaking of that experience.
As a self-advocate, I uniquely never take a side or have an all-or-nothing point of view when it comes to advocating for something. I take an unbiased approach when looking at things and many times outweigh the factors that are within the lines of what is being expressed. I probably do not have a high following on my platforms because of this nor do I express my views as the only way something has to be. I do not devalue family members primarily because I have been blessed with such wonderful and supportive parents all my life and while I do realize that everyone does or hasn’t had that opportunity, having the opportunity to bounce ideas off of them, and sometimes with others that have lived experience as a family member of an autistic person gives me another perspective to see things that all sides may not take into consideration when expressing their opinion on something that they are passionate about.
An additional reason that I realized that I have a lower following on my platforms is the fact that I do not believe in profiting off of my experience and I never will. It has never been about making money off of my experience and it never will be. Additionally, only buying a following by sending targeted ads to those is a way of making yourself more vulnerable to those who only follow you with not so good intentions and have an agenda to derail you in the process of your work. Granted, there are many pages out there that have a great following and I see EVERY voice, self-advocate, family member and those with experience as equally important as they all have experiences to bring to the table. There are enough mutual connections out there and my willingness to keep things fresh on my platforms will give the opportunity to have them grow at a good rate of speed. Part of this is realizing the fact that I must also take care of myself in this process by following all necessary regimens and routines necessary for being well .
Being able to see things from different perspectives also gives you an opportunity to see sometimes how you present yourself when being in an environment that you may think you are doing well in. It gives you another set of eyes to see the flaws and what, if anything, needs to be improved in your journey. Being aware of how you present yourself and being able to accept criticism and feedback is key when factors when being a self-advocate and also being able as in many instances where you may want to react to something instead choosing your words wisely and responding diligently and not immediately, thus causing a rage to ensue. This doesn’t mean that you can’t take your side or be passionate about something, Rather it is how you present yourself when being in the role of advocating for yourself or others that will determine in most cases how it is valued or received by the other parties in the discussion.
As a self-advocate, it must be understood that all voices matter because when it comes down to someone speaking for something whether it be for autism, mental health or any other challenge on the horizon, everyone experiences some facet of what is going on within that community and everyone’s story while their own experience is just as valuable as your own and while value is taken in how you present that story or experience, we must understand that we all matter in the big scope of things.