I would love to say that this process is straight forward and that no matter where you live in the UK or even abroad that the path is easy, fast or even trouble-free. In the UK the paths to diagnosis are many and varied. For me I knew that while our family GP is very supportive and helpful, I knew I needed to have my facts straight, my thoughts clear and my reasons for seeking a diagnosis needed to be understood.
I started with an online test. Which can be found here. I knew once I took the detailed test, that the results could be printed off, so at least I would have something I could present to the GP to show I am just not self-diagnosing and that there was certainly cause to be concerned about. I certainly think that because, at the time, The Bear was still waiting for his ‘official’ diagnosis & that perhaps on some level this might suggest that I may have it too. To add to this, I made a very big, very long list of behaviours/ traits that I thought were relevant to the cause.
Just as I created a list for The Bear, when I took him to see the Community Pediatrician, I started with thinking about my sensory issues with taste, sound, balance, smell, touch and ‘other’ sensory issues. People with Autism often suffer from sensory issues, and you can read more about that is detail here. Some are over sensitive and others under and often most are a combination of the two. It is often called Sensory Processing Disorder or they say Sensory Processing Difficulties. Having dealt with The Bear’s issues, I was luckily able to look closely at everything.
Then I went through listing all of my behaviours and 5 pages later, as if by magic I was finally done. Five pages of me, full on. Reading it in black and white, I will admit looks rather harsh. However, as with most Aspies you will find honesty is key, so while it was a rather long and detailed list, that list was me, my personality, essentially the essence of my being. Once I felt happy with the list I went to see my GP. He was very supportive, listened to my reasonings, my feelings and given the fact that the little one was well on his way to a diagnosis and due to other neurological issues within the family he agreed to refer me on.
Here in the area where I live all referrals for any ‘Mental Health Services’ must go via an assessment team. Here’s where you kinda feel a bit odd. They are really assessing to see if you are ‘stable’ mentally and also it gives them a way to either send you on an unnecessarily long path to diagnosis or short cut you to someone who can actually help. I know I was very lucky to get the short path and this was only made possible because of other issues that we have going on in our house. I was told that to help ensure my own well being they would pass me on to the psychiatric consultant for assessment. “Yipeeeeeee. Oh wow, now what?”, came to mind. I really was unsure what to expect, when it was going to happen and had no idea the process involved. I’m more of a plan it to death and visualise how it will all work out, kinda girl. So, then began more hours of online research.
I read in various groups about different assessment processes across the country. Some are one to one consultations that took 5-8 hours of assessments to come to a conclusion. Another is based on the DISCO process which involved speaking to people who knew you as a child, paper forms and an end interview. Others processes are conducted by a panel of several psychiatrist in an interview process over several visits. The latter seemed to me to be more like a prisoner probation review, which was certainly is not something I would choose if given an option. I could deal with 1:1 discussions because as I stated previously, I love to talk about me and I feel I have a very good analytical approach to my behaviours and thought processes. The DISCO process I was really unsure about because that meant possibly having to speak to my mother, who lives in the US, about my issues and about details from my childhood. This was my least favourite process because my mother and I are not very close. Deep down I have always felt an emotional disconnected from her, but not because I chose to be but because she chose that for me. I spent some time wondering when I would hear back and when I would get more details about the upcoming process. Surely if they know I am going for an ASD assessment, they will know I live for detailed information? Perhaps not. It took 4 weeks from seeing the GP and being phoned by the assessment panel for me to finally receive a letter with the interview date. Wow! That was fast, right? I was just as shocked as you are now. I only had to wait 3 weeks to see my new Doctor.
As I walked into a clinic on my appointment day, I was full of anxiety, energy and my senses were on full red alert. When the doors opened I was hit like a sledge-hammer by a smell that within 2 minutes gave me an instant headache. It wasn’t that it was an unpleasant smell but the cleaners put the deodorizers on full blast and it actually made me feel ill. The anticipation of waiting in a room, for this unknown doctor who would have such a profound impact on my life, was choking me. It was only after he walked over to introduce himself that I realised that I tidied up the papers on the wait room coffee table in front of me and put them squarely into the bottom right corner so they would be neat, that I realised just how anxious I really was. His introduction was brief and he shook my hand, which I promptly tried to wipe off and he asked me to fill out an AQ sheet for him. He said would come back in a few minutes to take me for my interview. The assault on my nostrils drove me to distraction and took me much longer to answer the questions in front of me. As with other quizzes, I felt the questions were a little ambiguous, so I wrote on the quiz on some question why I answered as I had. If these test was going to be part of my file I wanted to make sure people really understood me. About 5 minutes later he came back and led me to the interview room.
The interview was very relaxed. He did his best to try to put me at ease and I told him that the smell in the building was too strong and had given me a headache. He apologised and offered to open the window to give me some fresh air, which I thought, was a nice touch. We talk a little about what the assessment would entail, which was really a lot of questions about me, my childhood, how I feel about people, my environments, communications and most importantly how I felt a diagnosis would help me. I eagerly handed him my list of “traits” which he kept to put in my file and would assess later. We spent an hour talking through things. It was so hard to keep my trail of thought, to answer the questions and even to understand them. I was also distracted by some gardener 100 yards away with a strimmer that was trimming the hedges. I mean really, Jenn? You’re here to talk about something important and some man outside is more interesting? Focus, girl, focus!! One subject that unintentionally made the Doctor quiz me more was my distinct dislike for being touched by other people, even friends. As I finished on the subject the Doctor apologised to me for having extended his hand to shake during our introduction and in subsequent visits has always kept his distance and never extended his hand again. Yeah problem solved! Now if only he could share that with everyone in the world, my problems would be solved. Hahahaha.
My reactions to touch and adding this to a lot of his other questions allowed him, within the hour, to say to me, “I am 99% certain that you have Autism, specifically Asperger’s Syndrome, but I just want to confirm things with my senior consultant.” He also asked me to take some paperwork home for Adam to fill out about his perceptions of my behaviours and it would all get analysed and put into my file. I left and was really quite unsure how I felt. I knew deep down what the results would be, the relief was acute and the years of emotional turmoil were all finally justified in my mind. However, I knew that until it was in black and white there was no way I would really be able to process things. I got home with the papers and told my husband, who as ever, was very accepting, comforting and able to keep me grounded and focused on what was important. He also knew there was no way he was going to get away with not filling out the form he was sent within 48 hours. Not that I am controlling, but let’s just say I am assertive when it comes to what I want.
I was interested in reading what my husband put about me in the papers. We all see ourselves in a certain light, but looking through someone else’s really give you the chance to see how others view your actions and behaviours. My husband is my best friend in the whole world and while I care very little about the opinion of others, I hold his opinions above all else. Reading that he thinks I talk too loud was nothing new but that he thinks that sometimes I am too nice and that it is to my own detriment, was certainly thought-provoking. His thoughts on my behaviours made me really pick through even more my own reasoning’s for why I feel and act as I do. It also brought up our only really arguing point and something that my husband really doesn’t like about me.
Once all the forms were filled out we sent them back and the Doctor analysed them too. It was about 2 weeks later that the Doctor called me say “we have analysed everything and I have spoken to my senior consultant and he is in agreement that we are 100% certain that you have an Autism Spectrum Disorder, Asperger’s Syndrome and with that we also feel that you may also have ADHD, Attention Deficit Hyperactivity Disorder and if you are willing we would like to assess you separately for that. How do you feel?” Uh, wow! I wasn’t expecting the call and certainly not expecting the ADHD issue. I had finally gotten my head around the AS diagnosis but ADHD was a new one on me. I agreed to the assessment and that he was ok to send me out a few other forms to fill in, which “would not affect the outcome of my diagnosis but just for your file” and hung up the phone. Done and Done. In a matter for a couple of months I went from just a ‘normal’ person with issues to have a definitive AS diagnosis. So the new chapter begins and life as I knew it would never really be the same.