Today’s article comes from guest blogger Andrew Smith, and is about the process he went through to obtain an adult diagnosis of Asperger’s Syndrome. Two of Andy’s articles have already been published on the Seeing Double blog (see “Asperger’s Syndrome and Communication” and “Asperger’s Syndrome and Employment”) and his poetry can be found in The Poetry of Autism: Eyes of Perspective. His experience of being diagnosed highlights many flaws within the system, and I would urge anyone reading this to take on board Andy’s advocacy for person centred care. People with autism and Asperger’s have just as much to contribute to society as neurotypicals, and we deserve both an accurate diagnosis and the person centred support that should follow said diagnosis. Awareness of my condition enables me to play to my strengths and not constantly beat myself up for being different to the people around me. For that reason, everyone should have the right to an autism assessment and doctors should not be deterred from treating their patients simply because of the cost. Now, over to Andy…
My journey to a diagnosis of Asperger’s Syndrome began in 2007. I had always felt there was something different about me and that I was missing out on something in life, but I couldn’t put my finger on it. People would say I was weird, strange and displayed inappropriate behaviour at times, but I had nothing concrete I could use to explain why I am the way I am. I’d looked at various mental health conditions and whilst 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 Time and noticed I displayed many of the characteristics 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, thinking he would show compassion/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. 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 denied I had Asperger’s Syndrome, making it clear 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 I found the most distressing about the behaviour of my doctor 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 I had Asperger’s Syndrome or was I imagining everything? Because of this I decided to write down how I felt and why, leaving it to the psychologist to decide. On the day of my appointment I was prepared mentally and went in feeling confident which is crucial in a situation such as this. It’s very easy to forget important details about something like a medical condition, and very often these details can make all the difference. As a consequence of my preparation 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 relying on his memory of our brief discussion.
A few weeks later I received a letter from the psychologist stating he felt I had Asperger’s Syndrome and that it would be beneficial for me to attend an assessment for the condition 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 better and inform each other of the different pathways to diagnosis to prevent the patient becoming lost and confused by the whole situation. I also believe that doctors and other healthcare professionals need more autism specific training. Said training should portray the full spectrum of the autistic condition and the differences between children, adolescences and adults. This would put doctors and other medical professionals in a better position to offer person centred care, rather 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. 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, over time, their health will improve and they may need less support than they did at the initial point of intervention.
The most important thing to remember is that patients are human beings with real emotions, feelings and beliefs. If they are reduced to a cost then they are being reduced to the same status as a broken down car that can be left in a scrapyard to slowly rot, not as a valuable member of society which they are.