On with the list of realizations and experiences!
3. Autism research, ie online searching in my case, is about 85-90% addressed to the parents of autistic children. Very little information is written for adults on the spectrum and only a handful of that is written by autistic individuals. Frustrating. One of the most prominent sources of information about autism is produced/sponsored by the organization Autism Speaks.
I really, really, really can't stand Autism Speaks. I cringe whenever I see articles listed as being on their website. I outright avoid it and have blocked it on facebook.
In fact, the vast majority of adults I've read that are autistic are absolutely against the organization, some vehemently so.
Autism Walks sponsored by Autism Speaks are actually protested against in person by autistics-the very people they claim to support.
April is an extremely difficult month for a lot of people on the autism spectrum--some even experience extreme meltdowns and anxiety at the sight of the puzzle piece, or banners saying "Light It Up Blue". While most of us don't have this strong a reaction, I understand it. This has nothing to do with more people being aware of autism, it has to do with the absolute fear-mongering poison produced by Autism Speaks that paints autism as an "epidemic", something like H1N1 or the Zika virus (the reason more of us are diagnosed is because the tests are finally both more accurate and being used!). It has to do with the fact that with the millions of donations received by Autism Speaks, only 4% goes to actually helping autistic people. A ton of their money goes into finding a "cure" and spreading the culture of fear and ableism surrounding public perception of autism, much of which they themselves perpetuated in the first place.
I will say this here and now, Autism is an effect of the way our brains are wired--no pill or shot or shock therapy or bleach enema will ever be able to rewire our neural anatomy!! Autism also does not end at childhood--most of us have figured one or two ways on how to function enough in society that we seem to 'disappear'. We still look odd and get things wrong sometimes (or often), but it is blamed on something else, like eccentricity or sheer rudeness. We're still here, folks! You'll really find that out if you're around when our support system fails or no longer meets our current/evolving needs.
Ok, off my soap box. For now.
4. It hurt a lot when I heard about the reactions of a few members of my family. I love each and every one of them so desperately--I am not afraid to say that I would be absolutely devastated if anything happened to any one of them, and would even at this moment do anything I could to support any of them no matter time of day! I know that growing up with me was very difficult for all of us, and that I was not really a nice sister to be around, but I have fought so hard over the last 14 years to change. I have left so much anger and pain and resentment behind me to be a better person, to be a better sister and daughter. Has it always worked?
Of course not. Family wounds aren't like scratches. You can't just put on some antibiotic and a bandaid and expect everything to heal cleanly. Family wounds hurt deep and leave scars, some of which are impossible to overcome without help. I still have one or two I'm working through, even after 14 years of working on them. I know for a fact that there are some still around that I caused/contributed to in my family members and it hurts very, very deeply in my heart to know that I have brought pain and anger to my family.
It hurt that some would not believe that I am autistic until I was officially diagnosed due to past experiences with me, not out of any fear of the possibility of a loved one being autistic.
It hurt to find out just how annoyed and sometimes angry some still get with me and I frequently don't even know when or why. How can I fix anything or try to prevent it if I don't even get the opportunity to know what it is I'm doing wrong? No, I don't want to dredge anything up, and I don't want to rock whatever equilibrium exists between us now, just munch on this and if you ever want to talk or ask questions you have my number :).
I am not suggesting that I am innocent in all of this either, not by any stretch. Yes autism makes it harder, but that doesn't mean that I can just stretch back and make everyone dance to my tune--I am still here on this earth to do my best! The Lord knows what I need to learn to get back to Him and He is the one who knew that there are lessons I will learn by being autistic that I could not learn otherwise, and I trust him! More on that in a future post. Suffice it to say that I own what I do and have done wrong, and that I will do everything in my power to make amends, because I love you!
One thing I will not own though is that which lies between others and the Lord, those thoughts and words and actions that are not in tune with the gospel that come from continued anger and resentment. The ball is not in my court on that one, though I will do anything within my power to help them make the basket.
I will say though that I love the reaction I got from Mom, my brothers and my sister-in-law. Instant acceptance from all four and support in so many different ways from them and from my Dad. The growing appreciation and acceptance from at least one or two sisters has also been very warmly received, and my relationship with my autistic niece has never been better. Thanks, you guys rock!
Next Post: Finding Me - Finding Out pt Three
Last Post: Finding Me - Finding Out pt One
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