“You have a house and are a mother to two children.”
“My husband works. “ and so does my uterus.
The following post is the fifth in a series of excerpts adapted from by Katherine Uher
“You don’t strike me as having Asperger’s.” my GP said as she glanced at my list. “These issues could be caused by a combination of an anxiety disorder, depression and possible OCD.
“All three?”
“Yes. It doesn’t have to be Asperger’s.”
“You know, Asperger’s isn’t diagnosed by ruling out everything else. It’s not like it’s the least likely possibility. I think it’s more unlikely that I would have three disorders rather than just one.”
“You speak very well.”
“Thanks. And you.”
“You have a house and are a mother to two children.”
“My husband works. “ and so does my uterus.
“I mean I don’t see the point for you getting a diagnosis.”
“Okay?”
“Why do you feel you need a diagnosis?”
“I’m in my mid thirties and I’ve never held a job for more than three months. I want to go back to school and work towards a career that I can actually keep. I want to be able to ask for the support I need.”
“I’m sorry,” she said, glancing again at my list. “Look ...” Sigh. “I’ll refer you to the adult diagnostic team. They can say for sure. The waiting list is long though, and my guess is you won’t warrant a diagnosis.”
What I had said about work, school and wanting support was the truth - in the years to follow I would do everything I had just said I wanted to be able to do. I would earn a degree as a psychotherapist and work at a GP surgery, and keep my job for over a year before going into private practice. - But that wasn’t the main reason I wanted an assessment done. The truth was that I wanted something tangible I could hold in my hand as permission to stop hiding who I was. On a level too deep to acknowledge I had always felt at fault for my sensitivities, my rigidities, my struggle with emotional regulation. I was in my 30s and did not feel like a grown up. I needed someone to tell me there was a reason for this.
Two years after my request for an assessment had been filed, the paperwork was declared officially lost. People had seen it. My name sounded familiar. But no one knew what had happened to the request. I had to go back to the GP, repeat the first conversation and get my request re-filed. The second time I was queried about whether or not I enjoyed sex with my husband. I think a sheepish smile appeared on my face. I like sex with my husband. Evidently this was another contraindication. My GP informed me that some people had cancer. As in, some people had real problems.
After my “lost” paperwork was re-filed, it was then denied. They weren’t saying I didn’t have AS, they were simply refusing to assess me at all, saying I had no “clinical need”, which is a term that doesn’t have a standard definition within the NHS. They can use it to deny a service but they can’t, when asked, explain what “clinical need” is. After I filed an appeal I started calling the regional office a few times a week to check the status of my appeal and to make sure they hadn’t “lost” it again. On a side note: I know three other women in the North East of England, where I live, who asked for a referral to get assessed for AS, and all three of them then had their paper work “lost” too.
Three months, and roughly 50 phone calls, later funding was approved and a date was finally set for an assessment in a further three months’ time. My entire assessment (the one I had waited two years to get) consisted of a 90 minute meeting with a mental health nurse. Following that meeting I was denied a diagnosis on the grounds that I had good hygiene. I fought for a reassessment, clinging to the argument that I needed this for school. I finally received my official diagnosis in the autumn of 2012.
I hear similar stories all the time. My worry is that adults are being under assessed for fear that they will be a drain on resources should they get a diagnosis. Along the way, certain clinicians made comments about what sort of benefits I would be seeking post diagnosis. I never sought any. It was never about that for me. Personally my diagnosis has given me the confidence I’ve needed to take better care of myself and has lead me into a career I can actually hold, that allows me to contribute to our family.
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