To begin with I outwardly refused to accept that I might have any condition, despite the fact that internally I was battling against feelings of inferiority and low self esteem. I was in denial. But my anxiety, phobias and obsessive compulsive disorder (more about this later) were severely curtailing my life. I stopped travelling. I limited my diet, which was a great shame became I love food. I rarely left the house, and I had no friends or social contacts.
Eventually I couldn’t be in denial any longer. I was watching a music video with my parents, and my dad started talking. Because he was talking, I could not hear the music, and I was so upset that I started to scream and cry. This sort of outburst was nothing new, but the outburst’s intensity shocked my parents and made them say that enough was enough. I had to seek help, whether I liked it or not, or my Kate Winslet videos would be confiscated. I begrudgingly agreed to make an appointment with my GP, but once I had had time to process this decision, I felt really relieved. The hardest part, admitting that I needed help, was over, and finally someone was going to treat my anxiety.
I could not set foot in the GP surgery because of my OCD, so the GP visited me at home. She referred me to the mental health team, and I waited 3 months before seeing a Psychologist for weekly sessions of Cognitive Behavioural Therapy. But my anxiety and OCD did not get any better. The Psychologist thought that I had social phobia, and did not mention autism. But I was beginning to accept what I had implicitly known for a long time – my problems were developmental, with origins in infancy, and I was not someone who simply had a mental health problem. My dad had mentioned Asperger’s consistently over many years, a drip-drip effect which permeated my subconscious mind. I decided to find out more about Asperger’s, which was something I had been putting off doing for years. After googling Asperger’s, I was amazed to discover that I displayed the vast majority of the traits. My heart beat fast as I went to tell my mum about what I had discovered. ”Yes”, my mum said, ”I have suspected that you had Asperger’s for a long time”. My parents encouraged me to ask for a referral to the Autism Team. At this stage, I felt it was very likely that I had Asperger’s, but I wanted a thorough assessment for my own peace of mind, and to rule in or out any other condition. It was very important for me that I received the correct diagnosis so that I could have an explanation for my difficulties. I did not want to spend any more time feeling so alone and isolated. I wanted to feel that I belonged, and I wanted to meet other people who were similar to me.
The GP agreed to refer me to a Consultant Psychiatrist. The first Psychiatrist that I saw was very unhelpful. There must have been some confusion because she spent the whole hour talking to me about social phobia and why I should take seroxatine, a type of antidepressant (I refused to take any medication). I thought that she was going to refer me to the autism team, but this did not happen, and I felt very upset. I went back to my GP and asked for a referral to another Psychiatrist. This Psychiatrist was far more helpful, and he took a detailed developmental history. He was very honest about his level of expertise, and told me that while it was very possible that I was autistic, he could not offer an opinion because he was not qualified to do so (I wish that all Psychiatrists were this honest!). He agreed to refer me to the Autism Team, but told me that I would have to wait about a year before I could be seen.
While I waited for my assessment, I received an hours support a week from a mental health support worker. She encouraged me to walk around the local area, and even through the town centre, which was very anxiety provoking.I looked forward to seeing the support worker every week, and I began to feel slightly less anxious and more optimistic.
At long last the autism team got in contact to give a date for my assessment. I was first seen by a Clinical Nurse Specialist in November 2008. He chatted to my parents and I, and asked many questions about my early development and current functioning. I felt surprisingly relaxed and relieved. Finally someone was helping me to understand my existence, and I was going to get an answer for my life’s difficulties.
At the end of the initial assessment, the clinician told me that he was convinced that I was autistic. He did not think that I needed to be seen by the multi-disciplinary team because he had already gathered enough evidence. However, I wanted the assessment to be as thorough as possible, and so I asked for a referral to the clinic.
The multi-disciplinary team agreed to see me in March 2009. I had to travel to the clinic, and the prospect of travelling by train made me feel very anxious. Thankfully my dad contacted a taxi company, and they agreed to provide a mini-bus! I also had a car phobia, but being high up in a bus felt a bit safer. I was very anxious, but because I had no choice, and because getting an accurate diagnosis was so important for me, I somehow managed to travel to the clinic.
At the clinic I spoke to the Psychiatrist while my parents were interviewed by the Psychologist and Speech and Language Therapist in another room. The clinicians then went away to discuss their findings. After a break, we all sat round a table and the Psychiatrist told me that I definitely had autism. The Psychiatrist’s words helped make the diagnosis definitive and conclusive in my mind. This day was one of the best days of my life.
Shortly after receiving the definitive, formal diagnosis, I was referred to the local autism charity so that I could get some support. I suddenly started to feel a lot more confident even before I started to receive any autism specific support. A new chapter in my life had begun.
I would like to emphasise as a post-note, that my condition would have almost certainly deteriorated if I had not received an explanation at this time in my life. It is largely thanks to receiving autism specific support that I am now able to travel on public transport and enjoy a reasonably active life.