Ive just completed three months of being what other people would describe as a "Guinea Pig" , but obviously I put a stop to that name as I have Aspergers. I didnt want to talk about it until the end, and it ended last week.
As I was diagnosed 16 years ago I recently agreed to go through it all again, as I was curious about how they allow for levels of coping. Over the past 10 years the improvement in my condition has been huge, based on telling professional services to go fluff themselves and developing my studies into Mindfulness, WRAP and Acceptance. I have learned to live alongside Anxiety and Depression and work with my Aspergers to create a career etc. Not easy, but doable.
Step 1 was to re engage with professional services and see what they had to offer I hadn't already surpassed, and to go though diagnosis again. What we learned was that there is no allowing for coping skills when working out the severity of Aspergers, as I am undoubtedly very Aspergic yet I have developed a way to overcome some issues.
In other words , to gauge the severity of my condition i would need to forego my practices of control to get a true reading. The Psychiatrist was instructed to shove that theory up his behind, as I dont voluntarily become ill. He didn't like that idea, I didn't care. Not surprisingly I was diagnosed with Aspergers Syndrome again ( Go Figure...)
Step 2 was to go through a FACS Assessment.This was an amazing experience as despite a Consultant Psychiatrist, Psycotherapist and CPN producing information for the Social Worker explaining my complex needs, I was found after 1 hours effort to be someone with no needs whatsoever. This was someone with no knowledge of Aspergers who had never met me before. This person completely ignored all information from the 3 professionals I have worked with me. They even applied the criteria of FACS incorrectly and got the procedures wrong ( I know this because of the next Paragaraph).
Having Aspergers, I simply went on the FACS training myself before I had the assessment (never underestimate an annoyed Aspie). I took my own notes during the assessment ( which puzzled them). I was noting the incorrect procedures. When I received the assessment I went through the complaints process using facts and logic.
In short I've won, changed a few systems and opinions. Thats why I chair a Peer Support group, despite the meetings being socially and environmentally painful for me.
But the question is.......
What if I had been a delicate, confused inexperienced kid with no heart to take on multi million pound organisations? What if I had been a worn out Mum or an exhausted partner trying to get help for someone who lives with Aspergers?
What If I hadn't been a 40 year old, mentally tough, experienced Aspie with a mind trained for patience?