‘I just want to be happy – is that too much to ask for?’

An Anonymous Story

I have Bipolar, Borderline Personality Disorder and many other anxiety issues.  My thirteen-year-old son has severe ADHD, ODD, Dyslexia, Learning Difficulties, severe behavioural problems and thought processing problems.  We are both medicated for our illnesses.

We have both been diagnosed and we are both on prescribed medication. So I would like to know why I have had to fight for ten years for my son to access services he has desperately needed.  All these have been denied.  He’s not allowed to join after school clubs, because it’s too risky.  He’s not allowed an education in my county.  I have had to seek out the best solicitor, who has helped my son join an out-of-county residential school, who cater for his every need.  This school has helped my son so much, yet I had to find this school through a solicitor.

I have had major depression since I can remember.  As I got older, I started to self-harm, and now I have a long history of suicide attempts. I have been medicated since the age of eighteen, and over the years I have seen many psychiatrists, CPNs, psychologists and therapists.  I have also been prescribed many different types of medications.  At the age of seventeen, I was admitted to a hospital for children with behavioural problems.  So why was I, in 2008, discharged from my entire network of support, having been told I ‘look’ like I’m ‘coping’?  Why have I had to fight ever since to receive support, but have been either fobbed off, ignored or been totally denied access to services needed and lied to?

I am forty-nine years old and I am living in hell.  I don’t sleep because of the nightmares and I don’t want to be awake because of the real-life nightmares I have to face daily.  If it weren’t for my son, I would have been gone a long time ago, but I stay to try and help him.  Like me, he has no one else.

In 2013, how can this be happening to us?  We don’t have money or expensive things; we aren’t spoiled.  All we want is help to hopefully enjoy our time on Earth.  Is that so much to ask for?

Thank you for allowing me to share our experiences.

A Note from the Editor:

I get the impression you live in the UK.  Is that correct?  I live there too, and I have family who work in social care / social services, as well as friends who are psychologists.  I know all too well how common your story sadly is.  The government has ‘cracked down’ on benefits over the last few years to a painful degree.  Somehow in trying to stop people from taking liberties and living off benefits when they don’t need to, the government has managed to take these away from people who genuinely require that support. Furthermore, this comes on the back of quite a number of people having no tolerance and forming prejudices against people who need that extra help.  It has been an incredibly frustrating, upsetting time for many people and I want to thank you for sharing your story, because people like you need to speak out.  Otherwise, how will anything ever change?

If you have a story to share, please contact us here. We don’t mind if your story is inspirational or simply a way of getting things off your chest.  We proofread all stories, but we censor nothing.  And if you want to make sure you don’t miss out on the stories other brave people share with us, be sure to click the ‘Subscribe’ button at the top-right of this page.

]]> http://conditionalpublications.com/2013/07/02/i-just-want-to-be-happy-is-that-too-much-to-ask-for/feed/ 1 http://conditionalpublications.com/2013/06/25/am-i-autistic-by-derek-thomas/ http://conditionalpublications.com/2013/06/25/am-i-autistic-by-derek-thomas/#respond Tue, 25 Jun 2013 10:13:27 +0000 http://conditionalpublications.com/?p=1752 ‘Am I Autistic?’

by ‘Derek Thomas’

Am I autistic? Maybe. Not wholly convinced, but that’s the diagnosis. Took the medical profession over four decades to come up with that, but they seem quite convinced by now. Still not buying it. I don’t lack empathy. Far from it. Emotions mean as much to me as to anyone. More, probably. Am I unable to see things from other people’s point of view? Hardly. Maybe I have too narrow a definition of what an autistic person can be like. Maybe.

I was recently asked why I have misgivings about this diagnosis. I referred to all the above, and my belief that my sense of humour didn’t fit. The doctor listened but seemed unimpressed. However, I added something else, which did cause her to start writing things down. I told her autistic people are not supposed to have any problem with their short-term memory, as far as I understand things. I referred to my belief that this is key to understanding my problems. I have an auditory short-term memory deficit, about half that of an averagely intelligent adult. Why do I say that, the doctor inquired. This came out during the digit span test component of my dyslexia assessment back in 1991. Who did the test? Mitzi Macregor. This seemed to come as a shock to the doctor. Don’t know why. I’d referred to this often enough before. Not to her, of course. Never set eyes on her before, but to Dr Bennie, her colleague, the consultant I refused to talk to anymore.

This auditory short-term memory is a pain. It means I have to write things down that no one else needs to. Unfortunately it’s impossible to persuade people. They tell me I don’t have to write things down. These people are idiots. They make my life misery. Why won’t they listen? What’s wrong with them? Because I can’t get people to understand when I have to write things down, I avoid them. Only option open to me. That makes me isolated. Autistic people are supposed to like being alone. I don’t. Well, not all the time. I like company. I like exchanging things. Ideas. And tangible things too. Christmas prezzies. Chocolate. Saliva. Stuff like that. Hugs. Caresses. You get the picture.

The relationships I like are one-to-one. They’re pretty much all I can handle. In addition to my memory problem, which I will explain in detail in a bit, I have another major problem: distractability, especially where the human voice is concerned. Unlike anyone else I’ve ever came across or read about, I have a serious problem focusing on the person talking to me when there are other voices in the background competing for my attention. I have no control over this. No point telling me to pay attention or to block out everyone else. Either get them to shut up or there’s nothing I can do. Get me somewhere else, so I can hear what you’re saying. Don’t blame me for not being able to focus. That’s like complaining to a blind person in the hope they’ll instantly grow a pair of eyes and suddenly be able to read from the blackboard after all. There are things I can’t do that everyone else can. Deal with it. But, again, no one understands this massive limitation. So I withdraw from people. I’m a loner. Frightening, isn’t it?

But this is not the complete picture. I believe I have attention deficit hyperactivity disorder, without too much of the hyperactivity. As far as attention is concerned, that is more inconsistent than turned off all the time. I can hyper-focus. But I have little control over this. I believe adrenaline plays a part. That is another reason I think ADHD better explains what’s going on here. I read in a Temple Grandin book once how people have been misdiagnosed as ADHD and autistic, jumping back and force between the two. Maybe neither condition is properly understood. If adrenaline helps me the way I believe it does, that might explain why stimulants like Ritalin can make hyperactive kids less active. Maybe the hyperactivity is a form of self-medication. When the drug does its work, hyperactivity isn’t needed anymore.

And maybe hyperactivity was never an option for me due to absence of stamina, clumsiness, two left feet, accident proneness, only one good eye, meaning no stereovision/depth perception. Other forms of stimulation are required. Fear. Anger. Anything that gets me excited, regardless of what the cause is. When that happens I seem to be on autopilot. I’m ‘in the zone’. I think this explains why I have been able to be active politically. For part of my life, I used to thrive in political debates. I loved the cut and thrust of polemics. I used to take lots of notes while others were talking. I knew what I did and did not need to write down. Often I did not even need to refer to these notes afterwards. The mere act of writing things down kept my mind from wandering, distracted by people whispering in the background. But whispers were all that competed with the main speaker. Such meetings had a structure and rules. One person spoke at a time. You listened until it was your turn to speak or you suffered the consequences. These rules work for me.

When I was a kid teachers, didn’t know what to do with me. They thought I was an idiot and I know what they meant. They had no idea how to teach me, so they gave up even trying. Stuck me in the corner with paint and paper while they taught everyone else. Nothing I could do about that. When I was about ten, they made me repeat a year. I was mortified. It was now official. I was a cretin. However, this turned out to be good for me. Second time round, the class didn’t seem all that bad. I managed to catch up. More than a little. Why didn’t they do this to me before, for Christ’s sake. Anyway….

By the time they did this, something else changed. Prior to this, I had to take in information from my teachers by word of mouth. They spoke and I listened. At any rate, I gave a good impression of listening, but got utterly lost. My auditory short-term memory deficit meant learning by this method was like learning in invisible ink. In one ear and out the other. I zoned out. I daydreamed. Everyone knew the lights were on but there was nobody home. They knew I was there to make up the numbers but was not really part of the class. And no one cared. I could hardly write things down when I couldn’t really write. Not fast. Not fast enough to make a difference. How do you spell that, anyway? No pen nor paper handed to me to take notes. What’s the point? I couldn’t really read, either. Not the way others could. I learned the alphabet. Eventually. But why does C have two sounds and K only one? Why does C need to make that sound when S does the job? Why does it change when there’s an H behind it? What’s this about -gh? -ie? -th? Who invented these crazy rules? But something had happened by the time I reached ten years old and got flushed down into next year. Comic books.

I got into comic books, with chance playing a big part in this. It was the American variety. The superheroes. DC and Marvel. Started when I was about five, courtesy of a friend whose cousin sent him copies from America. My gran bought me some too. She got me into the Marvel heroes. I found some of their stories interesting. More mature. I liked them. My single talent was an ability to draw. Turned out I was good at capturing human anatomy for some reason. Perspective came naturally to me. Not sure why. Human faces. This impressed my peers. I was an idiot. Everyone knew that, even my parents. I was strange because I couldn’t hear what my peers or teachers or parents were saying. Kids like to make others feel they are worse off than them. They need scapegoats for all the hardship dumped on them by parents, teachers, authority figures, other kids bullying them. I was the lowest of the low. I needed to hide. Run away. But my ability to draw gave me a bit of an edge. I needed that. And I exploited it to the full. Since I found an ability, I nurtured it, tried to perfect it. Only by the standards of my peers was my draughtsmanship all that good. In retrospect, I was nothing special. But I felt a bit special. Since I wanted to learn from these comic books, I read the stories over and over. And as the years went by, I started to broaden my vocabulary. And that was the start of my liberation from idiocy.

Learning how to read, however slowly, changed everything. I failed my eleven plus. But secondary school placed a big emphasis on studying away from school. By reading. Homework. My peers hated this. I loved it. I could work as hard or as little as I wanted. In my bedroom. Free from distractions. I had to work hard. I put in a lot of hours. But it worked. From being dismissed as an idiot, I learned how to pass exams. And to pass well. From about the age of eleven, I knew how not to be dismissed as a complete loser. But this requires help from others. If they insist on my learning new facts by word of mouth, I’m screwed. I’m screwed if I am not allowed to take notes. But I need people to humour me. By and large, they refuse to let me take notes when they deem what they are saying to be easily understood. This has caused me no end of trouble.

Long before I crossed the half-century threshold, I started to consider suicide. No one cares about what they’re doing to me. I have known about attention deficit disorder since about 1991. Been convinced for about two decades that medication for ADHD would sort me out. In the absence of such medication or any way of convincing others they need to be sensitive towards my auditory short-term memory deficit and ultra-distractability, I am unemployable. And, in the absence of a stimulant form of ADHD medication, I am unable to cope in social environments. Informality scares me. All those people talking over each other. It’s like verbal soup. How can anyone isolate what someone is saying when all the conversations get mixed up like that? I brought this to the attention of my GP around 1998. He told me he’d set up an appointment to get me tested for ADHD within a week. Going to cut to the chase. Despite the fact I’d been trying to get tested for ADHD for the previous seven years, I had to wait a further twelve years before I was finally given a diagnosis. And I have waited two years since that diagnosis for any medication.

Am I the only one who thinks the medical profession has let me down?

A Note from the Editor:

Thank you so much for sharing this with us, ‘Derek’.  I am really sorry to hear what you have gone through, and even sorrier to acknowledge that you are not alone in this.  Misdiagnoses are incredibly common, and I think it springs from the misconception that all of these conditions are completely separate from each other.  In fact, more and more research shows that they overlap and may all be different manifestations of the same things.  Also, owing to your age, there has been a great deal of misunderstanding about ADHD – namely, even when I was a kid in the ‘80s, it was thought that you had to be hyperactive to have ADHD.  In fact, there is another variation of the same condition known as ADD, which is much more similar to certain forms of autism and sounds like what you struggle with.  It’s hard to say which diagnosis is correct.  It may be that you technically have both – but in a way, that doesn’t matter as long as someone steps in to support you with your individual symptoms.  It sounds like they haven’t, even after all these years.

I can’t help you in that respect, but I do always think knowledge is power.  The biggest struggle we face with these conditions is lack of self-understanding.  But through reading other people’s experiences / books on these subjects, we can gain that understanding, which helps us to forgive ourselves for all the little quirks that have made us the butt of people’s jokes and discrimination.  If you are interested in any book recommendations, let me know.  And I would also highly recommend just getting involved in autism and ADHD communities online and talking to others.  It’s amazing what self-healing takes place once we find we are definitely not alone and, therefore, not ‘freaks’.

If you have a story to share, please contact us here. We don’t mind if your story is inspirational or simply a way of getting things off your chest.  We proofread all stories, but we censor nothing.  And if you want to make sure you don’t miss out on the stories other brave people share with us, be sure to click the ‘Subscribe’ button at the top-right of this page.

I have lifelong dyspraxia and a Masters Degree too.  I think I was born to be an extrovert, but finally became an introvert due to all the hostility I have suffered from others due to my Dyspraxia and my ADHD traits.  I don’t like people to watch me doing anything, so I stay away from them. I could never learn to ride a bike, to sew, to knit.  I still confuse my left and right at age 41.

Funny thing: I went to a writers’ conference and pitched my novel to a publisher and an agent who happened to be there.  They said I could send them the work (easier to say that than reject me to my face, right?) so I sent it to them.  What is funny to me is that I also sent the work to four other publishers.  Well, three out of those four publishers offered me a contract on my novel!  But the people I actually met and pitched to rejected it.  I can’t help but feel meeting them in person actually influenced them to reject me, when three out of four publishers who hadn’t met me wanted my book!

It seems that my dyspraxia is always that obvious and annoying to people I meet.  That’s why I now just stay home with my family and write, instead of knocking my head against a brick wall trying to be accepted.  I’m 41, so it’s taken me a long time to face this.  The fact that others can hold down a job at all is amazing to me.  I found that employers rarely accepted my disabilities and were always “letting me go”, despite me being capable in so many other ways.

I was diagnosed when I was around 6 years old…and I didn’t talk properly until I was only 3 years old. I am now doing pretty well in school except for the fact that I don’t like my school much as it gives me a hard time, but I have a really nice boyfriend too and he is like me, so that makes it easier. I hope you all like my story.

I am a 41-year-old woman who was always very quiet in school – so much so that no one would think I had ADD like my brother.

My life was one of being bullied and having emotionally challenged parents.  I was not cuddled much and we never talked about emotions, to the point that, after a 9-month waiting list, a psychologist ended up saying I was emotionally neglected.  Yeah, like I didn’t know that myself.

But as I grew older, I slowly gained in confidence and started talking more.  And now the trouble was I talked too much, with associations, metaphors and leaps people sometimes could not follow.   And I found out each of the few people I did call ‘friends’ were either borderline ADD, full ADD/ADHD or bipolar.

I do not get along with ‘normal’ people: I tell them something five times, and still they do not understand what I am saying – including psychiatrist.  I tell my story over and over as well as I can, translating my thoughts to a boxed-in mind.  So much effort and so little result.  In the meantime, I work and listen all day to other people and I understand them so perfectly, including what they are saying in-between the lines.

My first job was at a university as an interviewer.  Then I worked as a journalist, then as a legal assistant, then as a bartender, etc.  Always listening to people.  And they say I am such a good listener.  But they can hardly remember my name.  I dated a guy and found out after one year of dating that he did not know my last name correctly.  If I attend a meeting, the following day people start to explain to me what was said during that meeting.  I say, ‘I was there!  Don’t you remember me?’  They say, ‘No.  Sorry.’

I have ADD, am very HSP, and maybe a bit dyslexic (but only when I speak; not when I write).  Am I highly gifted like someone suggested?  No.  My IQ is only 123 ( I never did homework, due to lack of concentration, though I still managed a Bachelor’s Degree).  I took a course in Photoshop but, after some lessons, could not even find the switch to turn on the computer.  After many instances of hyperventilating  from crying on the toilet, I would start over and over and over again – without help from the teacher because she gave up on me.  Yet who had the exposition at the end of the term?  Me.  So the teacher said, ‘You walk before you crawl.  You’re always either running or standing still.  There is nothing in between.’

But whatever.  I wish I could talk to other people and have them listen to me for a change.  The only people who listen have ADHD.   They give me a headache, are blabbermouths.  I hate it.  But it is me.

ADD is: many months of burnout, and then all of a sudden I’m writing some cover article.  Everything or nothing.  I am sometimes blocked for months, no movement, I cannot do anything.  Then all of a sudden I am in free flow, typing nonstop.  My thoughts finally find an outlet.  No one I know reads it; it’s online and anonymous people around the world are listening.

And I am a peoples person, yet I cannot get a paid job because they don’t prolong my contract.  ‘You do not fit in the team,’ they say.  I don’t know why.  I only know they don’t understand me when I talk, like I speak another language.

Last week I interviewed a dyslectic person for my site.  We talked for an hour on the telephone.  He talked like me: leaps, metaphors, jumping thoughts, playful, looking at things from different angles.  If I speak with non-dyslexics and non-ADHD people, I feel like I need to speak baby talk, go very slowly and not use any metaphors.  I don’t understand why they can hold onto such well paid jobs, because to me, I’m sorry, they are the slow ones, the ‘inside the box’ thinkers.

I just want people to know that even though it has an awful name, Attention Deficit Hyperactivity Disorder is actually a devastating neurological illness. It’s deeper than it seems.

Sometimes it gets so bad I can’t even think straight or get anything finished. Being restless as an adult in public is not only tiresome, it’s embarrassing –  acting on impulse, saying things and wishing you could take them back. All of these things are tough to live with, not to mention having constant sleeping difficulty.

How about emotional instability, at times saying ‘I love you’ to friends and family like a billion times and other times wanting to punch someone out – being so distracted that you can’t drive a car, finish a Movie, read a long novel or even say a prayer in your head without getting your attention pulled elsewhere.

It’s tough and I just wanted to let people know it’s not the joke everyone thinks it is.