Two weeks ago I saw my doctor to get a referral for diagnosis of Asperger’s. As far as I know he started the wheels in motion. However, last week I got a phone call. Seems a new doctor has joined the practice and wanted to see me about my request. I saw him today. I had prepared my books with sticky notes on relevant pages, my notebook with the info I wanted to share with him. I even went through my “script” as to what I would say to him, starting out with requesting that he let me speak and not ask any questions till I got to the end.
I was anxious all day, but carried on being the Mama. Then it was appointment time. Keep in mind I have never met this man before and I knew that if I went in with my regular social persona on that I would present as a competent, capable, “normalish” woman. That is a persona that I have cultivated for almost 3 decades and while there is some small truth in it, it’s not me, it takes much energy to maintain, and with enough overload it can crack quite suddenly. I decided that I would drop all my protections and go in vulnerable and showing a side of me that I learned a long time ago to keep to myself and share with only a chosen few (so as to not fall victim again).
Well, the visit didn’t go well. He did give me my uninterrupted time to tell him what I thought I should tell him. But when it was his turn to speak the first thing he told me is that he had seen me speak at a community meeting a couple of weeks ago. (I occasionally do public speaking because I can’t keep quiet in the face of injustice and stupid BS. There are so many people on my island that are worse off than I, as they are dealing with even more challenges in their mental/physical health.) The meeting I spoke at was about affordable housing and the need to set up housing options on our island for the most vulnerable members of our community. I spoke about some of my experiences living for 5+ years without running water (2+ without electricity), as a single Mama. I had people come up to me later and tell me how articulate I was and how glad they were that I spoke out. Sadly, the docotor’s first impression of me was of a confident articulate woman. And so he told me at today’s appointment.
He went on to say that he thinks that even if I do have Asperger’s (which he doubts) I seem to have done very well for myself and that I should give myself more credit than I appear to be doing. He told me that I appear to be able to “choose” how to present to people, and in his experience people with Asperger’s are unable to choose how they present. They either are or aren’t. He went on with more but I couldn’t hear him any more. However, he had let me finish, so I let him finish.
When it was my turn again, I asked him how many people with Asperger’s he has seen. He admitted that it wasn’t “extensive”. I asked him how many of those people had been adults. He admitted none. I asked him how many of the people with Asperger’s he had seen had been females. He admitted none.
I read to him from Dr. Tony Atwood’s Complete Guide to Aspergers Syndrome;
“From my clinical experience, I have noted that girls with Asperger’s syndrome may be more difficult to recognize and diagnose due to coping and camouflaging mechanisms…The clinician perceives someone who appears able to develop a reciprocal conversation and use appropriate affect and gestures during the interaction. However, further investigation and observation at school may determine that the child adopts a social role and script, basing her persona on the characteristics of someone who would be reasonably socially skilled in the situation, and using intellectual abilities rather than intuition to determine what to say or do…The strategy is to wait, observe carefully, and only participate when sure what to do by imitating what the children have done previously. If the rules or nature of the game suddenly change, the child is lost.” (Atwood, 2007)
I asked the doctor if he had read the book. He said no, in fact he has never heard of Tony Atwood. (Dr. Tony Atwood is considered one of the world’s leading experts on Asperger’s syndrome)
Finally, at the end of the appointment he agreed that he’d “look into” getting me a referral. I left his office and broke into tears. I sat in my van and cried for 10 minutes before I could drive to my next appointment. That was with a beautiful friend of mine who received me and held me while I cried more. She was able to give me what I needed. She was able to see me and acknowledge me. She was able to ask me questions and listen to my answers. She validated the fact that she has witnessed on more than one occasion the very sensitive, confused, beautiful and vulnerable me that I protect fiercely. And she has also experienced the brave face I put on in the world, and she recognized it for the mask it is.
After today’s appointment, and having previously watched Girl Outside the Box’s vlog about seeking an official dx in this same geographical area, I am left thinking I don’t want to go down that route. I have spent many, many, many years building myself up past the hidden blocks that have been in my way. I have learned to be a brave advocate for myself (and I am proud of speaking up for myself today as I challenged what the doctor thinks he knows) and I have learned to stand up in the face of bullies and injustice.
However, sitting vulnerable and laying open my own protected self for some stranger to pick through and say yeah or nay, or find what is worthy or not?!? I left today’s appointment feeling violated, frustrated and utterly overwhelmed. I was unable to be present as a Mama or partner tonight. I just wanted to run away and hide.
As the dust settled, and the kids were off to sleep, I sat down and sorted through it all with my partner. What really keeps coming up for me is that I left school almost 30 years ago, at the age of 16. That is the last time I have subjected myself to jumping through hoops of official acceptance (except when I got my driver’s license). What am I doing seeking official acceptance now….especially from a system as f**ked up as the medical system? I don’t believe in pathologizing brain types, or divergence. Why on earth would I want to swim myself into their tight little channel so that they can rubber stamp me with their label?! And, then what??
The two reasons I wanted to get my official dx was so that
a) I could show the paper to family members who would deny that I have AS; and
b) so that I could lead my little one through the quagmire and confusion of growing up with this.
Now, I have decided that when challenged by family members I will advocate for myself – not in seeking their approval or agreement – but by saying, “I have done extensive research (as we Aspies are known to do when something interests us) and I am convinced that I have Asperger’s. You are entitled to your opinion, no matter how ignorant it is.” And leave it at that. Their opinion of me is none of my business.
As to leading my daughter, I will be much more able to do that by maintaining my own peace of mind and keeping myself away from ignorant medical providers. Besides, whatever treatment they have to offer I am not interested in. I favour the neuro-diversity camp. And that’s where I’m gonna pitch my tent. What my family needs from me is not an official dx, but my presence and ability to function as I lead us through this interesting divergence in the evolutionary path.
Thanks for listening. I will now remain un-dx’d
Related articles (further reading)
- Asperger Syndrome in Girls & Women (theunidentifiedblogger.wordpress.com)