I always knew I was different, that there was something which made me not quite the same as others in my age group. My teachers and some family members told me I was just shy – I believed this.
When I was 17 I volunteered at a summer camp for young children with disabilities, including children with Autism Spectrum Disorder. I was paired with a young boy on the spectrum. I had to attend a training session to help me gain more knowledge on how to care for the child and ensure they enjoyed their time with me at the summer camp. During this training they informed me that the child would not partake in imaginative play, that he would not make eye contact, that he would not talk much or that he would not play with the other children. Brilliant, I thought – this child was just like me. I enjoyed my time with the young boy. We kept speaking to a minimum and instead read books or played board games together. Other camp leaders would come over and advise me I needed to make him join in on games with the other children. However, I understood what he wanted, he wanted the same as me, to be left to read his book in peace. For him that was far more enjoyable than partaking in a game of Power Rangers which he couldn’t grasp the concept of. It stuck with me that I shared Autistic traits with this young boy, but I kept it to myself for months.
One night, an advert appeared on television for Autism awareness. I made a passing comment to my Mum that I thought I shared all the same traits as those on the spectrum. My Mum would probably have ignored such a comment, but at the time my younger brother was very ill. He was being seen by CAMHS, (Child and Adolescent Mental Health Services) a wonderful clinic funded by the NHS.
During his treatment they began to suggest to my Mum that they suspected he may be Autistic. To confirm their suspicions and to give him a diagnosis my Mum had to go for many meetings where they would discuss his childhood and explain how certain aspects of the stories my Mum would divulge pointed to him being Autistic. During this process, and as my Mum began to learn more about ASD she began to realise that not only did her son fit into the criteria, but so did her daughter – me.
It was during this time period I made the comment about me thinking I was Autistic. That evening my Mum came and told me about the process she was undergoing to gain my brothers diagnosis and how she thought I would benefit from meeting with CAMHS. CAMHS is for those under the age of 18. Unfortunately, at the time I was 18 but they kindly agreed to see me for a one-off session. From that session they advised me to go to my GP and have them refer me to the Autism specialist clinic in Sheffield. I was referred and then had to wait a further year for an appointment.
In the meantime my brother received his diagnosis and despite being told not to, I couldn’t help but hang on to the thought that the word Autism explained so much about my past. My diagnosis appointment lasted for four hours. I talked to the doctor about everything and Mum was there to add stories and support me. At the end of an exhausting appointment I received my diagnosis. I was Autistic; more specifically, I had Asperger’s. I felt relieved, I had fought my whole life to act normal and push myself to be someone I wasn’t. Now I finally had an explanation and a reason to avoid certain situations which didn’t make me feel like a failure as a human-being.
There were days, and still are, when I feel sad about my ASD, where I wish I was neurotypical. The majority of the time I am proud of who I am and of my Asperger’s. I kept it secret for nearly two years, telling only those closest to me, (occasionally having my honesty thrown back in my face, as recollected in my previous blog post). It is only now I am making a conscious effort to be open about it. This blog is one of the ways I am trying to be more accepting of my Asperger’s and what it means to me. Although some of my posts may focus on the negative, I truly am proud of my ASD and the way it allows me to process life and the world around me.
According to statistics one in four children are on the Autism Spectrum. Four times more boys are diagnosed with ASD than girls. This isn’t because ASD is more common in boys, it is because girls tend to mimic neurotypicals and therefore their Austism goes unseen. It is only as we become older and life becomes more challenging that professionals tend to pick up on ASD in those individuals which weren’t diagnosed at a young age – this was the case with my brother and I. The older you are, the longer the wait for a diagnosis becomes; you could potentially be looking at a 2 year wait.
Although ASD diagnosis has progressed in the last few years there are still many who slip through the net. Some may not be diagnosed until they are 40+ years old, meaning they have had to go their whole lives struggling without an explanation. Autism diagnosis still requires, and deserves, a lot more funding and research to ensure all those that are on the spectrum receive their diagnosis, and in-turn the help and support they deserve.