Tuesday, September 1, 2015

It's All On You - When & How The Medical Approach Doesn't Work

I don't know why I am still surprised when people, especially those in the medical related field, don't understand autism. For some reason I keep thinking with all the people out there talking about it now, that the medical community would actually be listening and making note of the things being said BY AUTISTICS. Unfortunately, it seems as if none of this is actually happening. I don't care how many times you hear "autism awareness", people dont UNDERSTAND autism, even though almost every single person is "aware" of it. 

Most of the frustration I have that they don't understand it comes when I'm having an issue. Now, for a NT person, they have their standard protocol of medication or doing this or doing that. However, those things do not work for people with autism, for the most part. Autism requires another angle, another perspective, and a greater understanding on the part of the medical professional. It requires they break out of their mold, and think about it as an individual case, instead of a "this is what we always do in this case" way. My brain is literally, physically different than an NT person, and using the same approach to a brain issue is not going to serve me the same way. 

Also, as a constant learner or seeker of learning, I am always looking for answers on my own. I am not the kind of person who shows up at the doctors, takes their advice or suggestions or words as THE ANSWER, and goes home satisfied. More often than not, I am left disappointed, discouraged, and this lingering feeling that I was not heard, understood or served from an individual point of view. Time after time I show up with a concern, they run it through their mental database, give me their standard solution or suggestion, and close the case as solved, meanwhile I'm left with the struggle and a gut feeling that there is more to it than that. I don't fit into their perfect little medical manuals. The answers to the problems I have won't be found in their books, because people like me aren't found in their books.

I wish I could change the world, and make the medical community actually open up more to autistics, listen to what we have to say, and actually adjust their policy, protocols and "solutions" to the things we want and need, instead of just tossing us in the batch with all the other NT people. There are so many of us out there talking right now, and it seems like we should be heard and treated as the authorities of our condition. We should be the experts in the field, not some medical doctor who spent thousands in school to book-learn what we LIVE. WE should be qualified to speak on our own behalf, to explain what it is like for us, and to be treated differently based on those experiences, not just thrown in the batch and treated as if all solutions affect us equally as NTs. We are literally different. All people are different, but autistics are different in very specific ways. I feel frustrated that we know this, but the medical field will take decades to catch up to what we are already saying. They rely so much on their precious research, that they forget to treat us based on our needs TODAY, simply because they don't have the "documented proof" that we are different enough to deserve it. 

I've seen picture after picture of how the brain activity in autistics is different than in NT people. I think it should be easy then to determine, then, that our brain's physical and chemical structures are different enough to deserve different approaches. So you might think my depression needs medication, but you don't really know or understand what it feels like to me, personally, to even consider being on a brain altering drug, not to mention how it feels to actually be on it. You cannot and will not convince me that a drug will help when it actually increases my anxiety and depression to even consider being on it, and then those feelings are just confirmed by actually taking it. The one thing I need LESS of when I'm in a down period is something that makes me feel worse. 

We are VERY smart people. We know what is available to us. We are not afraid of or ashamed of asking for those things if we feel we need something more. But when we say we DON'T want it, DO NOT PRESS US. We are smart. We will ask for it if we need it. Health is about more than just what you normally think or do, it is about making us feel like we are the ones doing the choosing, that we are the ones controlling our own health. You have to give us the freedom to initiate those things, or else it feels forced and unwelcomed. It also undermines your authority on the topic because you don't make us feel as if you are listening to our concerns at all, only that you're throwing your standard answer at us and expecting it to be the end all to the problem.

Anyway. When it comes to your health, or dealing with the medical community, you as the autistic are the sole authority in the situation. You know how you feel, you know your needs, and you have to be your own advocate. You have to say no when you know it won't benefit you, you have to say yes when you know it will, and you have to give yourself time sometimes to consider it, bounce it around your head, and own it. Yes, sometimes they are right, and things will be better, but sometimes you are an individual and you know yourself, much better than they ever will. Don't be afraid to do what's best for you, even if it doesn't jive with what they think. It's all on YOU.

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