DIAGNOSIS AND BEYOND, A PERSONAL JOURNEY THROUGH THE MINEFIELD OF OBTAINING A DIAGNOSIS OF ASPERGERS SYNDROME

My journey to a diagnosis of Asperger’s Syndrome begins sometime in 2007. I had always felt there was something different about me and I also felt that I was missing out on something in life but I could not put my finger on it. People would say I was weird, strange and displayed inappropriate behaviour at times but nothing concrete I could actually tie down and say this is me and why I am the way I am. I had looked at various mental health conditions and whilst I felt I displayed some of the traits it did not cover the whole spectrum of emotions and behaviour I felt I had.

It was a friend of mine who suggested I might have Asperger’s Syndrome. She had read the book ‘The Curious Incident of the Dog in the Night’ and felt that I displayed many of the characteristics that the main character showed. I researched Asperger’s Syndrome on the internet and immediately felt that this was me, this was who I am and these were the answers I had been looking for all my life. I booked an appointment with my doctor mistakenly thinking he would show compassion and understanding and organise an appointment for me to see a suitably qualified psychologist. How wrong I was!

My first appointment with my doctor consisted entirely of me explaining to him what Asperger’s Syndrome was and why I felt I had the condition. I will not use the term ‘suffer’ as I feel that this gives the wrong impression. People with Asperger’s Syndrome do not suffer from it. They suffer from the ignorance of others who believe mistakenly they have little or no value to society. Unfortunately this view is shared by some members of the medical profession and immediately creates the first obstacle a patient needs to overcome, that is, the very person you go to for help and guidance sees you as a burden on the medical system rather than someone who needs compassion and understanding.

My doctor flatly refused to believe I had Asperger’s Syndrome and made it clear that he didn’t believe me and thought I was making the condition fit me rather than me fitting the condition. Reluctantly he agreed for me to see a psychologist for depression and a request for an appointment was sent off. What was most distressing for me about the behaviour of my doctor towards me was his outright refusal to believe anything I said about myself! He showed a complete disregard for me and my feelings and instead wanted to impose his own beliefs about my personality and behaviour on me.

This left me feeling extremely confused. Was I right in believing what I was feeling about myself or was I imagining everything! Because of this I decided to write down how I felt and why I felt that way and leave it to the psychologist to decide. Consequently on the day of my appointment I was prepared mentally and went in feeling confident which is crucial in a situation such as this. On many occasions it is very easy to forget important details about something, such as a medical condition, and very often these details can make all the difference. As a consequence I was able to leave the psychologist I saw with a valuable document for him to read in-depth at his leisure and make a considered opinion based on this rather than based on memory and a brief discussion.

After a number of weeks I received a letter from the psychologist stating that he felt I had Asperger’s Syndrome and that it would be beneficial for me to attend an assessment for Asperger’s Syndrome at Sheffield Asperger’s Service Centre. I made an appointment to see my doctor to organise an appointment again assuming it would be a straightforward appointment and the relevant paperwork would be sent off to Sheffield and I would wait for a date for my assessment. Again I was wrong. All my doctor was concerned about was the cost of the assessment and who was going to pay for it. There was no compassion shown whatsoever for my mental state or for my emotions and feelings. The rest of my life would come down to cost and a faceless committee who would decide if I was worth the price of the assessment and if my life would be suitably enhanced enough to justify the cost.

This shows up another flaw in the medical system. Whilst one person may make a recommendation based on their professional opinion it may come down to another, disconnected medical professional to decide if the person gets the treatment they need. This can lead to confusion and delays and merely add to the persons problems rather than help them. Luckily for me the situation was taken out of my doctors hands as the psychologist I had seen had referred my case to his boss a consultant psychologist unbeknown to me and he had the authority to authorise the assessment without the need for it to go before a committee. Again this shows a severe lack of communication and a lack of knowledge of procedures between medical professionals. This is something that needs addressing as it can cause friction and confusion between medical professionals and patients when so many mixed messages are being sent and received.

My assessment for Asperger’s Syndrome went smoothly and it was confirmed that I did indeed have Asperger’s Syndrome and I had the diagnosis I so desperately needed. My only issue after diagnosis was again on the subject of cost when I told my doctor that I was receiving six sessions of counselling and his face dropped at this news. It was only when I told him that it was already included in with the cost of the assessment that his face began to regain some colour!

This is obviously a very serious subject and in summary it has to be said that a doctor in practice needs to believe the patient whatever his or her own personal feelings towards them and support them in their journey to diagnosis, not belittle and confuse them which only adds to the considerable stress and anxiety that the patient is already going through. Without this initial support the patient runs the risk of any other conditions they may have such as depression and anxiety becoming much worse and developing into self-harm or suicide because the patient feels that no-one believes them and there is support available for them.

Doctors and other medical professionals also need to communicate situations better and inform each other of the procedures that are available for a pathway to diagnosis in order that the patient isn’t lost and confused by the whole situation. I also believe that doctors and other healthcare professionals need not just more training but better training too. This training needs to replicate the full spectrum of the autistic condition and the differences between children, adolescences and adults. By doing this the whole medical profession will be in a far better position to offer care that is focused on a particular person and the blanket coverage that can occur today. By doing this and looking beyond the short term savings, long term health and wellbeing can be better monitored and maintained and in the long run savings will be made across the board because autistic individual’s health and wellbeing will be at the centre of the plan and over time it is quite possible that less will need to be done to maintain this level of health and wellbeing at the initial level of intervention.

The most important issue though is to remember that patients are human beings with real emotions, feelings and beliefs and if they are reduced to a cost then they are also being reduced to the same status as a broken down car that can be left in a scrapyard to slowly rot and not as a valuable member of society which they all are.