Me, Mental Health, Autism and how AMHA came to be. Part Two
Sadly not long after posting this piece, Claire passed away a few days ago during her battle with an Eating and Personality Disorder. Although I will not speculate to the cause of her death as no details have been released, I do know Claire was experiencing a terrible time on the Private Ward at Cygnet Hospital. You can find her last piece describing the horrific conditions of her stay through this link.
If you havent read part one, please check it out here first: Me, Mental Health, Autism and how AMHA came to be. Part One
Long before my Autism diagnosis or discovering Claire’s story that inspired me to create AMHA, I have always wanted to do some sort of project to raise awareness. Throughout my life, I have not only watched my parents, but experienced myself the discrimination, bullying, abusive, rude and stigmatizing behavior from people of all ages, backgrounds and professions, even now I experience stigmatizing and judgmental comments almost on a weekly basis. I constantly meet so many with no apathy or kindness, or display any care or slight understanding about Mental Health, and that’s before I add Aspergers and my physical conditions to the mix which are not always seen to the public.
I wanted to show what life is really like living with Mental Illness, hoping to give some sort of insight to others so they would understand me and my family better. It has always felt like I needed a sign round my neck telling the world whats wrong with me and why im struggling, just to feel able to be myself outside of the home. Although lack of opportunity and time has always been a big factor in not pursuing my ideas to raise awareness, my biggest worry was believing how I experienced Mental Health was wrong, especially as I didn’t relate to others with similar conditions to me, having met opposition in the past trying to open up in groups or at college/work. It caused a lot of doubt, and whether everything was all in my head. I also didn’t know what to expect when putting my life out for all to read, aswell as what my family and friends would think especially as im a quiet, private person. When I found out Aspergers Syndrome was the missing link after years of doubt, it made sense why I experienced Mental Illness differently, I already had that complicated base layer, before adding any Mental Health issues or physical disabilities, this fact was reinforced when I started working with others on Autism Spectrum, yet it was something that’s barely spoken about.
I have always found plenty of resources about Autism and Mental Health as separate entities, but trying to find out about those on the Autism Spectrum with Mental Health just didn’t exist. Plus accessing support services was another matter altogether, in my long journey to getting diagnosed, Adult Mental Health Services who were responsible at the time for diagnosing Autism, didn’t have a diagnosis service, but as I still needed Mental Health treatment, because Autism was suspected, the irony was without an Autism diagnosis they felt it wouldn’t be appropriate for me to access Mental Health services until it was known as they would need to adapt the treatment accordingly. I was told if I could get diagnosed I could then also access their Autism services, yet when I received the diagnosis privately having to go around the NHS, I was then told there are no Autism services and now I have the diagnosis, Adult Mental Health Service wouldn’t be the right direction to go. (Did that make sense as it still goes through my head) So I have been left in no mans land, still to this day. I was so angry that I was left with no help or support despite complaining, and investigations, and waiting, and waiting, aswell as trying to access support online which doesn’t exist in my area. I was, and still am fed-up with the current system in place. Postcode lottery and all that! Plus with no resources or help online, I didn’t know what to do.
This led upto my breakdown which was discussed very briefly in the first part. Thanks to my unmanaged Mental Health, combined with severe reactions from anti-depressants and coping with my now know Autism and discovering who i was again. Claire’s story was very important to me as it gave me the kick needed to rethink everything, It also gave me the push to finally put my plans to paper. By this point there were far more amazing online advocates and bloggers with WordPress sites, aswell as other types of media people in the Mental Health community were creating to raise awareness, along with the NAS, Mind, The Mighty, Autism Speaks, and similar organisations that dominate online search engines and local Mental Health centers, with masses of independent websites following closely behind, I felt quite deflated as I didn’t want to be a drop in a very large ocean, what’s the point in sharing my story if it just becomes part of this mass or stories. I didn’t want to blog or share any kind of content for the sake of it and I wanted to make some real impact to help others.
One of the changing factors coming up with a project for Mental Health was realizing now having Aspergers Syndrome alongside Mental Illness, I had an opportunity to speak up about something that was barely spoken about, yet incredibly common for people of the spectrum, there was a serious need for awareness about Autism Mental Health. I realised sharing just my own story via a blog wasn’t enough to make a difference, I needed more than one perspective, not just made up of blogs, I felt the perception of the Autism and Mental Health communities needed to change, and I hoped to use more creative ways to express stories to attract more people from those communities and open up about their experiences. I also knew there was a need to unify all these resources, blogs, WordPress sites, products, apps etc… As I wasn’t well myself, I knew it wasn’t something I would start traipsing though, I just couldn’t deal with having to surf through a ton of information to try and find content i could relate to or find support. I knew that I needed to create something new, simple and easy to find that would put everything in one place, and sit at the top of search engine results along with a prominent place in local Mental Health waiting rooms, I just didn’t know where to start. It was such a huge task, I had gone from starting a blog, to starting a share platform all at a time when I could barely get out of bed, with any time I had taken over with my trustee duties at Clearly Speaking which I did mostly from home.
After a lot of thought, I quickly realised I was in a very unique position to build this project, having a background as an artist who studied art and design, photography, graphic design and fine art, combined with being an IT Systems Engineer with website and coding experience, aswell as thankfully being a trustee to Clearly Speaking for nearly 3 years at that point, and working with young people on the spectrum. (I won’t bore you with the details) but I knew what was needed to create this safe, monitored environment, and I didn’t need anyone to help me code, create graphics or content. The biggest obstacle was my own health, stuck on benefits limiting my ability to develop the idea, but I didn’t want that to stop me. Going back to Claire, I remembered something from one of her stories, she used a charity called Fixers who help young people use their past to fix the future.
That’s where it all began, once I got in contact with Fixers with my early ideas, they assigned me a coordinator (Wesley), who has guided me to build my vision, along with Chris who helped me put together the initial graphics for the website, unfortunately as I had a more complicated vision as a run of the mill website wouldn’t cut it, I struggled to communicate my vision to fixers as to be honest, i barely knew myself at times, resulting in me having to build and code every aspect of what you now know as AMHA.org.uk. But in a way did me a favor as it gave me time to get my head around what I was creating and have full creative control.
I think I must have had the longest running fixer project as usually they're complete in a couple of months, mine took almost two years to develop as I struggled to come up with a name and branding for AMHA, going back and forth on ideas in the beginning, aswell as over complicating things thanks to a muddled head, because I really struggle with OCD, I can be my own worst enemy when it comes to design, and was one of the reasons I never did website design professionally.
Two years later, im pleased to say the first phase of my original plan for AMHA is now complete launching in September. During that time I started my journey to recovery, once I came off anti-depressants, I found the clearer my head, the more my initial idea grew. Thanks to Clearly Speaking, and Fixers, my connections have grown, helping me to add new resources to AMHA, but also get our project out there. Even though the website is barely 4 months old since launch, we are already bringing in hundreds of readers, with a new contributor every couple of weeks. As AMHA established itself, my family came on board who will be helping me develop the next phase of AMHA, aswell as help me develop new plans for a charity we will be setting up called Neurodiversity which will be used to make a home for all our upcoming projects including AMHA. I am determined to make the lives of those with Autism, Mental Health and physical disabilities better and stamp out the stigmas attached in any way I can while im on this planet, hopefully raising awareness at the same time. I don’t know if AMHA will ever work in the way I intended, but I will keep pushing forward, if I can develop this site while im suffering from Mental Health, then im hopeful when I get to the other side of recovery, I can take it even further.
I would like to end this blog piece with a quick message to Claire. Thanks to you Claire, AMHA exists, if I had never read your story about being sectioned, I wouldn’t be blogging my own story nor push myself to create this platform and begin planning a charity, you inspired me to step up and turn something I’ve struggled with my whole life into something positive. I know for a fact im not the only one you have inspired either. I hope if you do read this, you will have a chance to see whats been achieved, I do hope our paths will cross again and I can thank you in person!!
Thank you for reading, I hope you have enjoyed my first official post on AMHA, about time I think! I am so grateful for everyone’s support this year and to all my contributors who have taken that leap and joined AMHA. I will begin to blog more regularly next year in 2018! Please don’t forget to like, share and comment.
If you would like to share your story and inspire others like how Claire has for me. Please get in touch, or click the submit story button on the left.
I hope you all have a great Holidays and New Year.