Getting Diagnosed.

My second post followed my steps as I unravelled the mystery of my life: why I seemed so different from everybody I knew. I'd finally hit the nail on the head: I have Asperger’s! Great! Now what next? I'd done all the online tests (Autism Quotient, Empathy Quotient and Intelligence Quotient). So, all I had to do was to walk into my GP's surgery with all this info and walk out with a comprehensive diagnosis, right?

Wrong!

 I read from forums that people had to put the fight of their lives to get a diagnosis if they were past the school- going age. I braced myself for a fight as I booked a slot to see the GP one afternoon in April 2013. I walked into the GP's surgery on that day clutching a stack of papers. One was a detailed list of all my symptoms categorized under three main headings: 

-Difficulties with social interaction

-Difficulties with social communication

-Difficulties with social imagination

The other paper was a summary of how I had suffered in life as a result of my social disability and high anxiety levels that had often made me lose the will to live. Literally. I took that document along with me because experience had taught me never to rule out the possibility of selective mutism rearing his ugly head when I least needed his input. My "cheat sheet", as I called it at the time, would also serve as an aide-mémoire in case I blanked out. Lastly, I took printouts of every online autism test I had taken. I even had a letter ready in the event of my case being dismissed for lack of evidence. This was composed from an online template. 

 When my name was called in the waiting room, I stood up, smiling uncontrollably. I always did whenever my name was called after a long wait. I had arrived at the surgery over half an hour before my appointed time thanks to my fear of lateness.

I hadn't told anyone I would be doing this apart from my sister and my two best friends, Chris and Gilbert who were my pillar of support through this chapter of my life.

The doctor I was due to see was Dr B. As he ushered me into his office, I had a good look at him. He was an elderly grey haired man with a surprisingly young-looking face. It appeared to me as though part of him had been immune to age and time, that his face was that of a young man, transplanted unto the body of a retiree. I felt at peace with him. I simply had to trust him. I was in safe hands.

“Hello, how are you?" He began.

"Fine thanks! “I quickly replied...while he waited, probably expecting me to say more than that.

"What can I do for you?" he continued

"I believe I have a form of autism called Asperger's syndrome." I whispered. I gave him a summary of my life and handed him my stack of papers. After skimming through my pack, he announced that he would be putting me forward for an assessment but because I was already half way through my early thirties, there was a limit to what medical science could do for me to turn things around. I was given a further appointment for a follow up on the progress of my referral.

I smiled because I didn't know what to say to that and I was satisfied I'd gotten my referral without the much expected fight. Wow! That was quick, I thought! Everybody else struggles for this and I didn't even have to fight for it. Someone must be praying for me!!

A month later, I was back in Dr B's chair, listening to the horrific results of the referral.

" ...so they wrote back to me saying that autism is a 'childhood disease'. It would therefore not be the best course of action to proceed with your referral. Instead, a prescription for the treatment of your Generalized Anxiety Disorder was suggested." He spoke some more but I couldn't hear a thing. All I could hear was the sound of my heart sinking at 70 mph!

I smiled and thanked him. Took the prescription and walked away, too flabbergasted for words.

In the following days, I drafted a strongly-worded letter to the GP Surgery, copied in Dr B and his superior. I posted it and forwarded copies to many organisations including the National Autistic Society and the medical regulatory body in my area. I didn’t forget to send one to Patient Complaints.

Within days, I received a reply from the surgery apologizing for my treatment and offering me another appointment.

That appointment was only used to inform me that the surgery only followed simple procedures and that the final decision relied on the assessment team. Following this, the GP finished off by saying that the assessment team will contact me with an appointment...which they did!

That was the very first time I entered a psychiatric hospital. As I sat in the waiting room, surrounded by people who spoke to themselves and exhibited interesting patterns of behaviours, I appeared to be the odd one out, quietly playing a game on my iPad.

The session lasted for half an hour with the psychiatrist asking me: "Do you hear voices? Does the TV ask you to do things?" I almost burst into laughter...I wondered how he could keep a straight face and ask me such questions. I elaborated on my family history, behaviour patterns, social history and the tiredness I feel after the slightest interaction...and my worries."

"What are you most scared about, today?" He probed.

I confessed that I worried that he (and everybody else) would think I'm making it all up, that I wasn't on the spectrum and that I would find myself back at the point where I was confuzzled by why I was so different and I couldn't socialize like everybody else. " 

"I don't think you're making it up at all", he said, gravely. "I believe you have Asperger's Syndrome." At that point, I would have cried if he hadn't burst my emotional bubble with a …"however, an official diagnosis would be costly for the NHS and you are way too high functioning to be a cause for concern. I suggest you sign up for Cognitive Behavioural Therapy to address your anxiety and social phobia. If you still wish to have a diagnosis, which I wouldn't recommend, you could look at the private sector. You could obtain one for at least £2000."

I stood up, thanked him, picked up my coat and left the place as empty- handed as I arrived and a lot more empty-hearted than when I walked in.

 Before I exited his office, I requested a writ of his findings to be mailed to my address. That would be the closest thing to a diagnosis I would have for a long time to come...

[To be continued...]