ADHD/ADOS and Why I suck at people.
I've not posted here for a long time, but I need to cry, to post and to talk for a long time, and thought that this would be the best place to do it. I'm not sure if anyone even reads this anymore, but hey ho, here we go. I know a lot of people who disapprove of speaking about mental illness openly but quite frankly, FUCK THAT SHIT. If more people were open about this, then people would stop backing away nervously/accuse me of attention seeking/failing to understand and making the pain worse.
As background, I have been treated for mental health issues since I was 18 (so that's about fifteen years). I have been on and off antidepressants for that entire period. At times, I have been so ill I have been housebound; too afraid to leave without escort. I suffered from pre and post natal depression. I have self harmed in the past, though thank God, it's not something I do anymore. I have been on the "medically at risk" depression register for about six years.
In late August 2014 I suffered from a nervous breakdown. It was horrible. I had panic attacks that lasted for several hours, the longest one lasting for eight solid hours. That's eight hours of hyperventilating, being sick, palpitations, the works, I ended up in A & E twice and in urgent care on another occasion and the panic only stopped when they drugged me out of it. I smashed things, I threw things around, I curled up on a ball on the floor sobbing and yelling, begging for these feelings to stop.
Then they give me Promazine, an antipsychotic, and for a month, I spent my time in cloud cuckoo land, pleasantly sedated. "Pleasantly" is the right word; for the first time in decades I slept at night without having anxiety symptoms. Granted, I couldn't concentrate for more than a minute or two, but the pain went away, the anxiety went away, and the fear went away. It was bliss, quite frankly, utter bliss.
Earlier that year, Chris had been diagnosed with ADD (attention deficit disorder). We had been struggling, our marriage was held together only by pragmatism, but his diagnosis had given some hope that things could be better. ADD is one one of those disorders that is relatively new; there is still a huge amount of controversy surrounding it. For adults, the provision of care is pitiful. I spent hours chasing up appointments for him, breaking down and begging practice manager to chase for us. We took private care with the wonderful Rebecca Champion who I currently credit with saving our marriage. In the end the NHS took us seriously; provision was made and Chris began to receive proper care. I could go into detail but that is for Chris to do. This post is unashamedly about me.
Ever since he had his assessment, Chris began to suggest that I may have the same problem. I was dismissive; of course I didn't! I had worked in project management, I could be organised, I was motivated! I was nothing like him! LIke so many other people, I said this because I didn't understand what ADHD actually was. I have learned that very few people do. Bear with me while I explain.
When you say "ADHD" most people think of a small boy, badly behaved, bouncing off the walls, unable to sit still. This is perhaps the most visible form of the disorder but it is by no means the only form; I would argue it only accounts for around 25% of cases.
ADD, is at it's core, what they refer to as an "executive function disorder". The section of the brain that deals with attention span, working memory, and most cruicially, they filtering and prioritisation of stimuli is underdeveloped. The best anaolgy I've heard, describes it like this: The mind is a house. When information comes in and out, from the various senses, you open the doors to let it in. Then you shut the doors. If you have ADHD those doors are wedged open all of the time. We cannot control the flow of information into and out of our minds.
Here's an example; when you are in a coffee shop talking to a friend, without even thinking about it, you "zone out" the background so that you can hear what your friend is saying. The background fades - you stop hearing the chatter of the other customers, you stop hearing the "whhhst" of the expresso machine, you stop seeing the bright colours and registering the expression of every singe person walking past. Your brain filters the background noise out, so you can make out the words of the person you are talking to. I can't do that. I can't filter out the nonsense; I hear it at the same intensity as your voice, so I keep having to ask you to repeat things, I have to stare at your eyes and mouth intensely while we are talking to make sense of it.
Can you imagine that? Never being able to filter out a single sight, or a single sound? It's exhausting. It's overwhelming. I had regular panic attacks and just ommitted social activities in town from my life. To me; it was normal though. I thought that the panic attacks I had were caused by agrophobia or social anxiety and went through pointless therapy to help.
Social relations become hard; you forget things, you absorb all of the signals, but can't prioristise them and so make mistakes. You forget birthdays, you fail to respond as you should, not because you don't love the person but because your brain is telling you that it currently needs to be looking at *insert random thing* and that is just as important!!!!!
Chris kept suggesting I was broken in the same way as him. Almost to make him shut up about it, I went back to Rebecca and asked what she thought. As part of Chris' therapy she had spent several hours talking to me too. Expecting a firm "No" I asked if I had pinged her " ADHD radar". I was shocked when she said "yes". With this back up, I went to my GP. I was again shocked, when he read down my mental health history and immediately referred me to specialist care. Within eight weeks (speeded up I believe by my "at risk" status, I was seen and diagnosed with ADD, with some hyperactivity.
I can't explain how I felt. It was a revelation and at the same time it was a horrible realisation. I was angry; I'd been in therapy for fifteen fucking years and no-one had noticed this before! I was relieved; yes! I was broken and not just somehow stupid! So many things began to make sense. At the end of the day, there are good things about ADHDers too - we tend to be lateral thinkers, highly creative and have sensory hypersensitivities that when controlled, can be near super-powers. This was ok - it was validation and reassurance too!
Then of course the curve ball came in: "You are presenting a complicated picture Abigail; I think there is something else going on as well. I'd like you to be assessed for Autism as well." This knocked me sideways. This was not in the plan. My brother James, we have always thought he was ASD (autistic spectrum disorder) but me? I was intelligent, capable and functioning - surely not? I said this to the therapist. She replied "I think you underestimate just how intelligent you are. High IQ can mask both conditions." She began to run through her reasons, I paraphrase here: "you clearly present social difficulties and some of the responses are complex. The only thing that is making me hold back from a diagnosis now is that you make good eye contact. I want you to see a specialist before we start medicating your ADD."
Let me explain why this has upset me. I have always felt "out of place"; I never fit. People have described me as "deeply weird" in the workplace and ostracised me. I sometimes say things that hurt people with realising, I don't make close friends easily and I seem to get things wrong so very often. So many times, I have seen people I have loved drift away and just not understand what I have done wrong or why I never seem to be included. I'd told myself before, that I just had different interests, was probably brighter etc, but over the years it's got harder and harder to feel compfortable with people. I found a home with LARPERs, people as creative as me who were generally accepting of the oddballs like me, but even then, I've never felt confident. There has always been this inherant fear that somehow, as soon as I stop making pretty things or writing events, no one will want to know me.
Now, I've been told, that actually, I might be bloody weird, I might have genuinly been to blame for the bullying, for the fact that people distance me sometimes, for the fact that I don't have contact with anyone I went ot school with, for the fact that the first I hear of an old friend's pregnancy, a friend I love, is a posted picture of the newborn baby, that all of this really is my fault. That people do look at me and instinctively see a freak and back away.
Do you have any idea the sort of paradigm shift that is when you are thirty-three years old? I fear for the friends I have now; will I lose them too? My diagnosis does not help me heal the past - it makes me think I am as rubbish and as weird as I have always feared and rips open the wounds anew.
I am broken and afraid right now, and this is even before the diagnosis. ADHD is bad enough for it's social impacts; ASD will throw me even more. This is going to get worse before it gets better. I apologise now for the social recluse I am going to be, for refusing to believe you when you try and say nice things, even if they are true.
I'm no crazier than I was last week. You became my friend when I was like this. This is logic; logic is irrelevant. If I seem like I'm struggling over the next few weeks, it's because I really, really am. I'm not needy, I'm not demanding and attention-seeking; I just need your help and understanding.