Wednesday, 10 June 2020

The A Word

A guest blog post by Joe James

'Autism – a lifelong, developmental disability that affects how a person communicates and relates to other people and how they experience the world around them' (The National autistic society)

Where do I begin?

Well for a start I completely and utterly disagree with this statement. In fact I disagree with it so strongly that I wrote a letter of complaint to the NAS about how their generalisation of an Autistic individual is not only insulting, but damaging to us. They wrote back (Eventually) apologising but refusing to change it on the grounds that people need it to be classed as a disability so they can claim help from the government and possibly support payments. Where I agree that many people on the spectrum do need additional support, not all do and therefore it should not be classed as a disability. It should be classed as a different ability that comes with its own set of challenges. Life is a challenge for most people if not all people. But we don’t class everyone as being the same ability wise, so why class all Autistics the same? It’s just wrong in my opinion. We should be given the rights as a minority within the workplace instead.

This is why it’s bad. Imagine you are going for a job. You have a degree that you worked tirelessly for. It was so hard getting through the educational system because of how you were treated. You fought for your rights to be treated equally and you never gave up. You may not have been particularly social, but you studied and excelled at your subject, which is the only thing that should matter. You are smart, very smart. You know that given the right opportunity you will prove your worth and show your employer that not only can you do the job they require of you, but due to the way you can hyper focus and micro analyse, you will most likely do the job better than the average person. You do well in your interview. It was a little awkward at times (or it was in your head) but overall the interviewer was smiling and seemed pleased with your credentials and knowledge about the potential job. You masked brilliantly and though it was difficult, you did a great job. You go home full of hope and eagerly anticipating a phone call to confirm your new employment.

After you leave, the interviewer looks again over your resume. She notices that under disabilities you have written N/A (non applicable) she then looks under your set of skills. You have written Autistic, then listed all the reasons why that is a skill. She then googles the words, What is Autism? She is directed to the NAS website with the above statement staring her blankly in the face. This is a stumbling point for her. She thinks that perhaps you have made a mistake. She feels for you but knows that hiring a disabled person comes with issues. It shouldn’t, but realistically it does. She already has several disabled people working for her. She then looks through other resumes and decides to go with someone else. She really liked you, but autism is complicated and she doesn’t need that right now. She is torn up about it, but that doesn’t help you.

This is the reality of the situation that many autistic adults find themselves in. They are genuinely worried about telling a potential employer that they are Autistic. This is so wrong, they should be excited at the thought of having someone in their ranks that can think outside the box. A brilliant problem solver or a vigilant eye for details that others miss. It would be an asset to have someone with a brain like Einstein, Darwin, Jobs, Newton and Tesla. But no, we are ALL disabled and are defined by our communication skills, not our amazing brains and extraordinary abilities.
This is how I think now, but like many people, 7 years ago I didn’t know or care about autism. To me it was kids sitting in a room, having crazy temper tantrums and smashing things. It was weird people that couldn’t look you in the eye and moved around strangely. It was non verbal children that couldn’t tell their parents they loved them. I felt sorry for them, I felt even more sorry for their parents. I couldn’t see past what the medical profession and the media portrayed. I was convinced that autism was a disorder or disability and no one would change my mind. How narrow minded and wrong I was.

6 years ago things changed. My wife and I were watching a TV show. There was a little boy and he was being diagnosed with Aspergers. The show was all about whether a child was born with difficulties or whether it was down to their upbringing. In was obvious to me that the child was born like this and it turned out to be the case. Sylvia pointed out during the show that the boy was just like me. I have told Sylvia many stories of my troubled childhood and the difficulties I had making and keeping friends. She had lived with me and known me since I was 18 and we had struggled socially due to my outspoken behaviour and honest evaluation of people. I am highly intelligent and had always put my problems down to this fact. I had never thought that I was disabled. I likened myself to Sherlock Holmes or Gregory House and sometimes Sheldon Cooper. These fictional characters where all highly intelligent people who struggled socially and their struggles resonated with me. I looked at Sylvia like she had insulted me. “I don’t have Aspergers” I said. “Well rewind it and watch it again, listen to the kid described his life and his friendships at school. Watch him play with his Lego and monologue about why he likes it. That’s what you do when you are obsessed with something” she said. I rolled my eyes, but played along with her silly nonsense. I watched carefully and with a new perspective and what I saw changed my life forever. She was right, that little boy was me. It was suddenly like watching a movie about myself, but he had nice parents. Tears welled up in my eyes and memories flooded back of terrible days at school and being ostracized and bullied. Kids not wanting to play with me and friends betraying me to be popular. It was like a light had been switched on in my head and my whole life suddenly made sense. All this time, all those struggles and confusion. Why I never fit in, why I lost my temper so easily some times, why people didn’t understand where I was coming from and why I was so obsessed with things that I became interested in. Of course I saw it as a negative, but also as a relief. I finally could explain to People why I acted the way I did. There was something wrong with me, it wasn’t my fault.

Months later I was diagnosed officially and started telling everyone I knew that I had Aspergers and that is why I was so annoying. They said things like “I always knew there was something wrong with you" or “I don’t think you do have it, as you can talk fine”. “You don’t look disabled” was my least favourite. But I just accepted this and almost apologised for being broken. I, like many other Autistics, saw it as something that I had, like a disease or condition. At one point when I was studying Autism I had an identity crises, where I couldn’t separate my autism from myself. I didn’t know what part of me was my autism and what part was Joe. How could something that I have, be so entangled and embedded to who I was. I went through a stage when I just said “I’m not going to be Autistic anymore” like it was something I could leave by the door when I went out. I denied it and I hated it. I saw it as the cause of all my problems and the reason I had no friends. For years I struggled to come to terms with this thing that lived inside me. Making me angry, anxious, depressed, aggressive, over sensitive and easily distracted. I could only see the bad and eventually in 2018 my mental health collapsed and I regressed into full blown depression. I had made a mistake at work and blamed my autism, my work blamed it and I was determined to push it away at all costs. The more I fought it, the more I hated myself. I changed so much about myself that year, many didn’t even recognize the person I had become. I lost allot of weight and looked the best I had ever looked. I worked so hard and my boss was so impressed with me. I really worked on my temper and was so much more relaxed and easy going. I took up photography to help me keep balanced. It seemed to help me keep calm and did make me very happy. But alas, my Autism was still there and still affecting friendships. I wanted to tear it out of my head, I hated autism and that was where I was going wrong. In early 2019 I was seeking professional help through Time to talk. I had called the number but wasn’t even able to leave a message as the in box was full. It seems there are a lot of people needing help and I was just one of them. I continued with my photography and even started posting on Facebook. In 2018 I posted on Instagram, but this only made me upset as I judged every photo by how many likes it got. I became obsessed with it and would often not be able to focus on other things at home because I was constantly checking and refreshing the app. I was hyper focusing on this social and public scrutiny of my work and it made things so much worse. But Facebook (for me) was different. I posted on an amateur photographer group and my first photo was a success. So I posted another and another and before I knew it I was again apologising for being autistic and saying sorry for posting so many photos. That’s when something strange happened. People in the group were nice to me and said they loved my photos. It was then suggested that I post on Memories of Horsham, so I did. They also loved it and I explained I am autistic, so they would be ok with me posting lots of photos. This was hard for me, but things often are, so I just went for it. Of course I received some criticism, but overall the comments were very positive. It was then suggested that I start my own Facebook page so people could see all my photos. I started using the platform to talk about being autistic and all of a sudden I was giving people advice and hope for the future. Just by being me, I helped people. I stopped saying a “had" autism and embraced it as being part of me and not something I have to live with. I saw how being autistic was the reason I could take amazing photos and had learned how to do it so quickly. I was focusing on all the good things being autistic gave to me. Like hyper sensory issues. They were not issues when I was in the countryside surrounded by nature and beauty. They enhanced my experience of the world around me and I could share and explain this to others. I started a group called positively autistic and encouraged others to see the good side of autism. I fought my corner against negative people, stuck in their ways and hoped one day they would see what I saw and loved themselves, autistic brain and all. Because I accepted myself and embraced being autistic, my mental health was manageable and most of the time in a good place.

Being autistic is not a label for me. It is not a definition or a statement. It is who I am and the minority I am part of. It is my tribe, my people and in many cases my friends. It is an enhancement but also a struggle. It is badly underestimated and treated like a disease. It is wrongly depicted and unfairly defined by the medical profession. It is stereotyped and mocked by the media and it is shamefully misunderstood and mistreated within the educational system. It is looked upon as something that is wrong with me and rarely thought of as a benefit to the human race. But without us this world would be a very different and far worse off place. It is not the Autistic people that wage wars over land and greed and power. We are the scientists, the inventors, the experts, the artists, the computer programmers, the musicians and the puzzle solvers. We are the world changers and yet the world won’t change for us. With this in mind, I fully encourage those of you who agree with me, to write your own email to the NAS and demand they change their definition of what we are, considering we never gave our consent to this misrepresentation, because we were never asked or consulted. The only people that can define Autism is autistic people. That is our right, but we have been robbed of it.

My final thought is this. Many autistic people are trapped. Trapped inside their exceptional minds, unable to communicate, unable to function without assistance. They are lost and it pains me to be so helpless and unable to find them. But so many, in fact the majority of us are not lost, we are just very alone and if you can, please guide us. Sylvia was and still is my lighthouse. She guides me everyday to the safety of the shore. Sherlock needed Watson and House needed Wilson. Every Neuro diverse person needs a Neuro typical by their side. But every Neuro typical benefits from an autistic person who has reached their potential. It’s a symbiotic relationship between people who are very different but deep down, just the same. Be kind and love yourself. Being autistic is who we are, embrace it and you will be free to become the person you were destined to be.

Thank you for your time. 

Joe James

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