I have been quiet for a little while and I guess this is kind of why - services for people with Autism & ADHD are not good enough. One of the things I say is that I have a voice and I want to be heard...well I don't feel like my voice is being heard much less listened to right now so here I am and here is this post. I feel there is this assumption that as I have autism what could I possibly know about what is good for me and what I need? That is how I feel and I need to get this out here and now.
I feel powerless. Totally and utterly powerless. And writing this post is evoking extreme emotions I am unable to rationalise or fully express. I am now 28 years old and I have finally just been diagnosed with ADHD, a few years following my diagnosis of Asperger's Syndrome. But I'm no different to the person I have always been...except now I know. I am told I should take delight and pride in my achievement, that it is much greater because I grew up with undiagnosed autism and ADHD, battling against each other. And I didn't come out too badly so all is well - but is it? Is it ok that I struggled horrifically, invisibly, to get to where I am now? And if I got here by the skin of my teeth, if I just managed to get here well what else could I have done with some support? What is there in me that remains locked, untapped, untouched, unused, wasted?
My 20s have not been typical - I didn't go to festivals, clubs, on holidays with friends, travelling. I haven't had those types of carefree experiences, these years have been heavy, fraught with struggles, my experiences included mental health services, crisis intervention, diagnostic assessments and psychology appointments - if you are able to look in from the outside and be dismissive you have no idea how lucky you are that you do not have to understand or experience this. When I transitioned into adulthood it was like turning up to climb Everest with the equipment to go scuba diving - I had to improvise, I had to be resourceful and when you grow up undiagnosed you certainly know how to be resourceful. I am a master at resourceful, at blending, at hiding the fact that I don't understand what you are saying or doing. My life growing up was about masking all the things that made me different. My 20s and the demands of adulthood have brought me to my knees but they haven't been entirely without success. I have still done and achieved things that not many would and maybe it is these things which are part of the problem I have now.
Services for people with Autism & ADHD are not good enough. As much as I have been theorising about if I had had extra support with an earlier diagnosis, it is entirely possible that if I had been diagnosed as a child that things would have been no different. My childhood might have been a completely different kind of battle with services. But I couldn't imagine the diagnosis or knowledge making any difference and that is wrong because it should, it really should. If we can't get it right for children, how can we get it right for adults? It is all hypothetical of course, I could never know what life would be if I had been diagnosed earlier and I can't change it, but life as someone with a late diagnosis - well I have gotten by but things steadily deteriorated. I have been unable to sustain and maintain the sheer effort required for that base level of living and certainly not on my own. I'm talking the basics. I have never been independent as an adult. The older I got the more burnt out I felt, the less I have been able to cope with. Struggles I have which aren't visible because they aren't understandable. How could I do that fine then but not now? Why was that possible then but not now? How come you couldn't do it yesterday but today you can? You coped well before, you won a kickboxing world title, you did a speech to all those people - you're so focused and driven - you don't need help, how could you be struggling? But I am.
I was diagnosed with ADHD on the 7th July and my diagnosis didn't come about through just waking up one morning and thinking 'hey maybe I have ADHD, maybe I should see if I can get a diagnosis for the fun of it' - I never ever imagined ADHD would apply to me. It has been an explanation of a set of longstanding problems and difficulties I have experienced and the diagnosis has brought with it more frustration - life with ADHD does not feel fun. I was diagnosed by the ADHD & Asperger's team - so they should understand Asperger's and I thought that the assessment would be as hard as it got, (the assessment did not take into account that I had Asperger's which made it tougher to go through). But we are approaching the end of August now and I feel as though I have been forgotten. On the day I was given my diagnosis there was so much information to take in, first the information about why they were giving me the diagnosis and then the what happens next. I simply do not have the ability to process that amount of information presented verbally and nothing has been followed up in writing aside from the sheet of paper presented to me with a list of books about ADHD on it and this is incredibly disappointing especially as I was told to expect a letter within a couple of weeks confirming my diagnosis. My concentration and attention has been so bad lately I don't think I could sit and read a book. I have been trying to ascertain what is going on and when all the things they told me would have happened by now are going to happen. It is confusing. Why would they say it is going to happen within a timescale that it wouldn't? Have I just been forgotten? Of course I understand the limited resource and associated wait but at least is there not any indication because I need to know these things or I become crippled by anxiety - and sadly this has happened. Life is constant confusion.
Is any of this good enough? Should it just be accepted and what can be done about it? I was taught many years ago that you have no right to complain if you are not going to do anything about it - accept it or change it. So what is the plan here? While I am faced with this agonising wait for a follow up to this diagnosis, for discussion about medication - how can I make my life better for a start because that is what I was referred for some 9 months ago now. How can I begin to make sense of this when I don't have the tools or support to understand it? I have been placated with 'hang in there, what is waiting a few more months when you have always had to cope with this' - seriously?! But maybe there is some truth in this. In the grand scheme of things what am I? Just another patient, client, statistic - part of somebody's job that they can pack up and go home from at 5pm...but this IS my LIFE and my life runs 24 hours a day, 7 days a week. So what is there left to do but be resourceful and try and figure it out on my own...which is great I know exactly what I need in place contrary to popular belief but if I could act to put all these things in place on my own then why would I need the support in the first place? Maybe I wouldn't even have the diagnoses I have now. And the frustration caused by knowing what I need but being unable to implement it is undescribable.
And this is not the only experience I could describe, to describe them all would take me beyond a reasonable length for this post but at the moment it is the most pertinent. I was diagnosed with Asperger's in 2010 and now in 2014 have only just been made aware of what support I could and should be getting. After more years of stress and anxiety trying to just get on with it, being let down. I have had services apologise that they cannot help me but thanked me for teaching them about autism. I have been told by services that were there to help me with employment that they were used to working with people who were more disabled than me so this should be easy before they had even sat me down for our first meeting - and they failed. If I was so easy to support, why did they fail? I sensed all they were interested in was signing off their paperwork and closing their cases rather than supporting me to get where I wanted to be and into what was right for me. I am a person, I am complex and intelligent with feelings. I want to contribute and be part of society but I feel disconnected and isolated. I want the chance to show what I am capable of and to be supported in that but instead I feel less and worthless. Forgotten.
And the saddest thing is my experiences are not the only ones, nor are they the worst. Things can be a lot lot worse and in all honesty I haven't been able to explain my experiences in their entirety, some of it is too painful and upsetting. But sadder still is that these are the experiences that children are having and using to form an opinion about their disability with - as an adult doing the same I must end this post with the quote "it is easier to build up a child than to repair an adult". Services for people with Autism & ADHD are not good enough - it is obvious that a major issue lies within funding but for this to change there needs to be awareness and understanding in the right places. And how do we achieve that?
