Your Stories: Autistic Spectrum – Conditional Publications https://conditionalpublications.com The Home for Writers with Neurological Conditions Sun, 25 Apr 2021 13:43:09 +0000 en-US hourly 1 https://wordpress.org/?v=4.7.29 https://conditionalpublications.com/wp-content/uploads/2012/09/cropped-ourfounder2-32x32.jpg Your Stories: Autistic Spectrum – Conditional Publications https://conditionalpublications.com 32 32 Asperger’s: Late Diagnosis & Neuro-Typical Spouses https://conditionalpublications.com/2017/10/31/aspergers-late-diagnosis-and-neuro-typical-spouses/ https://conditionalpublications.com/2017/10/31/aspergers-late-diagnosis-and-neuro-typical-spouses/#respond Tue, 31 Oct 2017 15:27:34 +0000 http://conditionalpublications.com/?p=2445 Editor’s Note: This article is a combination of two articles that can be found on the writer Garret Mathews’ blog, An Aspie Comes Out of the Closet, a collection of thoughts and reflections following being diagnosed with Asperger’s Syndrome at 67.


Garret Mathews - Blogger at An Aspie Comes Out of the ClosetAm I selfish to a fault? Check.

Am I happily capable of spending long hours inside an isolation booth? Check.

Do I lack the wherewithal to understand even a little of what my wife is feeling? Check.

Why am I telling you?

I am 67 years old and recently had surgery to remove my cancerous prostate. While I can run five miles in less than 50 minutes and crank out 70 push-ups in the time it takes to play “Hey, Jude,” the truth is undeniable. I am not going to live forever, even if I can work up to 175 push-ups before “In a Gadda Da Vida” fades out.

So I live in the now. The let’s-get-it-done-before-I-croak now.

I came to the party late, but based on what I’ve read and what I know about myself, few Aspies will be remembered for being witty at parties. Even fewer will require funeral homes to hire extra parking attendants for our wakes.

I’m lucky. I have an out. I can write well enough to win awards (and thousands of dollars) in contests sponsored by a national column-writing organization and by Scripps-Howard, a previous owner of the Evansville newspaper.

I’ve done numerous books, several plays, and there’s a movie script with my name on it that’s making the rounds.

If I don’t use my words to reach out to others with Asperger’s (and their loved ones), I’m the worst slacker on the planet.

A counselor who specializes in Asperger’s invited me to speak to a group of neuro-typical spouses of Aspies who gather periodically to share feelings and pizza.

Actually, I didn’t address the group as much as I answered their questions, or at least tried to. Many of their husbands, I learned, are either in denial or have no interest in opening up about their Aspie-itis. The counselor thought they could use me as a sort of prism to gain insight into their bunkmates.

It was my first time in such a role, but hopefully not my last. As I’ve mentioned before in this blog, I am very willing to go public with my AS. If I can help even one person deal with life on the spectrum, my efforts will be worthwhile.

One woman asked if I could sum up my Aspie existence in one word. I thought for a moment and came up with “selfish.” My natural inclination in any situation that comes up, I confessed, is to determine what’s best for me and act accordingly.

Nods all around the room. I was on a roll.

I put all my focus into my job for the newspaper, ignoring what was going on at home. Aspie traits can be advantageous in certain careers, like the military, computer programming, or accounting. Many of the people at the meeting had spouses in occupations like those. But when dealing with the significant people in their lives, these helpful career traits are counter-productive. Lack of apparent feelings, “zombie-like” behavior, hurts relationships. In the military, for instance, if an officer shows emotion, “men could die.” But not showing emotion at home results in death — the death of the marriage.

Hours interfacing with computers was a common theme. Interacting with television is another behavior “annoying” to spouses. One Aspie husband, while watching his favorite movies, constantly blurts out dialogue and recites facts about the flick’s casting, production and distribution, making it impossible for his wife to enjoy the movie.

Me, too. If “The Good, the Bad and the Ugly” or “Unforgiven” or “No Country for Old Men” are on, my wife knows that for the sake of her mental health, it’s best to go to another room.

It’s the same way with music. If a John Fogerty composition comes on Sirius, I’ll rattle off the meaning of the tune and inform MaryAnne, who doesn’t want to know, of other songs that are on that particular album.

I know I’m being a smart aleck, but there are so many things I suck at (fixing anything, doing the taxes, driving on crowded interstate highways) that I feel the need to ballyhoo the little bit that I know.

Another woman told me her husband’s favorite thing to do is play his electric guitar at full volume in the garage. She arranges her schedule to give him four hours alone at his craft, “but when I return he looks at me like I should have stayed away longer. He says he spent the first few hours paying bills and didn’t plug in his amp until later. When I mention that he could have paid the bills any other time, he throws up his hands and says he can’t do anything right.”

I understood completely. I do the same thing when MaryAnne finds fault with me over something I consider trifling. My favorite retort is to say the converse isn’t true, and that she would almost have to commit felonious assault for me to question her behavior.

What I don’t understand is why my wife would have to bring up something that bothers her. I take that as criticism of me as a person.

I’m trying to work my way through that, I explained.

Nods all around. I thanked them for their understanding.

As I got ready to leave, one person said I am “good at bantering.”

Reciting Clint Eastwood’s dialogue in “Unforgiven,” knowing the story behind Fogerty’s “Proud Mary,” good at bantering — I’m on a roll.


Vrinda Pendred - Editor & Founder of Conditional PublicationsMessage from the Editor: Thank you so much, Garret, for allowing us to share some of your work.  It’s a great insight into how you think, and it made me reflect on certain behaviours I have noticed in my ASD son.

If any readers would like to hear more of Garret’s insights, please be sure to check out his blog and follow him.

]]>
https://conditionalpublications.com/2017/10/31/aspergers-late-diagnosis-and-neuro-typical-spouses/feed/ 0
‘The Kids Aren’t Alright’ – An Autism Story by ‘Heather’ https://conditionalpublications.com/2013/06/27/the-kids-arent-alright-an-autism-story-by-heather/ https://conditionalpublications.com/2013/06/27/the-kids-arent-alright-an-autism-story-by-heather/#comments Thu, 27 Jun 2013 11:40:00 +0000 http://conditionalpublications.com/?p=1815 ‘The Kids Aren’t Alright’ 

An autism story by ‘Heather’

My first-born child is autistic, but it took many years to learn this.  I didn’t know he was different until he was four years old.  Now, at the age of twelve, life is just so hard for him – not that it has ever been great for him.  The other kids are so mean to him.

In February, he tried to kill himself.  We now have a team of really helpful people, which is great.  But school is still a big problem.  He just got punished for hitting a kid who was hitting hurting someone.  My son thought he was doing the right thing; he thought he was saving the kid who was getting hurt.  It’s something he has wished so many times for himself when harm was being done to him.

The Vice Principal has given him two days of out-of-school suspension.  I’m not saying my son was right in what he did – but he does not understand why he is being treated this way when the kid he hit did not get in trouble for hitting the person my son thought he was helping.  Now, because of this, he cannot go on the school field trip to Gillett Stadium, and I can never afford to get him there myself.  I am very upset with his school and the way they have taken care of this matter.

A Note from the Editor:

I am very sorry to hear about this.  Unfortunately, this is an all-too-common occurrence.  Children are forever being misunderstood by their schools, even in this day and age.  My son was suspended just as yours has been, but when he was only five, and it was purely because of his anger outbursts as a result of what they now think is either autism or ADHD, combined with OCD / anxiety.  I can’t tell you how hard I had to fight to get everyone involved to understand that our son is not a bad or naughty child, and that he doesn’t even know what he’s doing when he has those fits.  We have been trying to get support for him for three years.

I also personally recall how hard it was for me in school due to my own diagnoses (which were not, in fact, diagnosed until adulthood, so I had no defensive ammunition against the way I was sometimes treated).  All I can say is: thank you for sharing your story, because the only way anything will ever change is if we keep bringing these things to the public’s attention, and work toward educating people about the challenges our children face.

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.

 

]]>
https://conditionalpublications.com/2013/06/27/the-kids-arent-alright-an-autism-story-by-heather/feed/ 2
‘Am I Autistic?’ by ‘Derek Thomas’ https://conditionalpublications.com/2013/06/25/am-i-autistic-by-derek-thomas/ https://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.

 

]]>
https://conditionalpublications.com/2013/06/25/am-i-autistic-by-derek-thomas/feed/ 0
‘A Very Lonely Time’ by ‘April’ (A story of Depression and Autism) https://conditionalpublications.com/2013/06/24/a-very-lonely-time-by-april-a-story-of-depression-and-autism/ https://conditionalpublications.com/2013/06/24/a-very-lonely-time-by-april-a-story-of-depression-and-autism/#respond Mon, 24 Jun 2013 21:31:42 +0000 http://conditionalpublications.com/?p=1819 ‘A Very Lonely Time’

by ‘April’

I remember feeling extremely sad from the age of nine. I preferred being at school. When Friday came and others looked forward to the weekend, holiday or summer breaks, I would dread it. I never knew what mood my mother would be in, overly happy and enthusiastic or withdrawn and mean.

I didn’t understand it at the time. I was the youngest of eight kids; the older siblings either moved out or didn’t come home until my dad returned from work. I was too afraid to get in trouble for not coming right home after school. I wasn’t allowed to join clubs or sports or play with the kids on our street. I grew up very lonely.

In the summer I taught myself how to climb a tree – though only on the days my mother was in a good mood and didn’t keep me in my room or lock me in the basement – and by the middle of summer I made it to the very top of that maple tree. There were times I wished I would fall, but then was afraid it would only paralyze me and I would have to be under the care of that woman for life, with no means of escape.

At school I would get in trouble for acting out or talking too much. I never learned how to socialize. When I turned eighteen, like the rest of my siblings, my mother told me to move out. I was not prepared in any way. I was an introvert, on the verge of panic attacks all the time. Extroverts offended me constantly. I didn’t fit in anywhere. I made the wrong choices picking men and relationships because I didn’t know who I was and kept trying to mold myself into something I wasn’t because other people thought my personality was weird or awkward. I was a good worker and desired to go to college, but never had the means or encouragement to do so. It was a very lonely time.

I have been married twice, the first time with no kids. My ex-husband would not let me go for counseling no matter how much I begged him and told him I thought I needed medication to help me be a better wife. He told me I would only end up leaving him. I left him anyway, because I didn’t think I could go through another ten years of being controlled and not seeing any ray of sunlight.

I jumped out of the frying pan and into the fire and, six months later, I married someone I hardly knew, someone I thought was completely different from my first husband. I was wrong. The lies, the secrets started right away, and while I was pregnant he started physically abusing me. We went to ‘Christian’ counseling, but he didn’t change.  I was expected to stand in the gap between my husband and Jesus in prayer until God finished his work in him.

After five years of marriage, our three-year-old son was diagnosed with non-verbal Autism. I was expected to figure out how it happened, fix it, bring him to therapy, take care of the child and the household. Again, it was a very lonely time. After eight years I said I couldn’t do it anymore, and they told me I didn’t have enough faith. They also said medication wasn’t the way to go.

I went to a technical school and got a job right out of school. The pay was okay and benefits were great, so I found a psychiatrist and psychotherapist. I got on medication and talked about stuff and started feeling empowered. I also put my youngest son with Autism on medication to ease his anxiety and behavioral issues. But eight years later the oldest one moved in with his dad. The youngest, with Autism, was getting too big and strong for me to handle his behaviors of biting and head-butting me, and his dad wouldn’t give any extra help. I ended up falling at work and breaking my legs. I was in the hospital for a few months and his dad then had to take in our son. Then, for whatever reason, he sued me for custody. He didn’t have to be so dramatic – we could have worked it out amicably, even though that is not his nature.

Two years have passed since then, and I visit with my youngest son (now seventeen years old) on regular basis. I live alone in a one-bedroom apartment like I started out when I was eighteen. I am still on medication and seeing my therapist regularly, but I still feel very lonely and I still don’t know how to socialize outside of work. People think I have my life together and that I am the friendliest most easy-going person ever. I am friendly toward others at the coffee shop, but that’s it. Fifty years old and I’m in the same spot as I was as when I was eighteen. It’s a very lonely time.

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.

 

]]>
https://conditionalpublications.com/2013/06/24/a-very-lonely-time-by-april-a-story-of-depression-and-autism/feed/ 0
Family: Where Would We Be Without Them? (An Autism Story) https://conditionalpublications.com/2012/12/29/family-where-would-we-be-without-them-an-autism-story/ https://conditionalpublications.com/2012/12/29/family-where-would-we-be-without-them-an-autism-story/#respond Sat, 29 Dec 2012 19:26:43 +0000 http://conditionalpublications.com/?p=1763 Family: An Anonymous Story

After a long conversation with a friend about a subject that really matters to me, I began to think (and so did she) that this might be a subject that matters to a lot of others like me. The subject is family, most especially the families of those with an Autistic Spectrum condition. I read many news articles and blog / forum posts about parents putting a voice out there for their child.  I have read the same sort of posts written by siblings.  But what they rarely talk about is the great job they do bringing us up and the strength this takes, and the strategies they have to come up with to help.

I believe this is something that needs to be spoken about, honoured and respected.  I know only too well how it hinders parents and siblings and the work it takes, because my family take part in that work very day. One person I have always worried about in the process of helping me is my mum.  She is the most remarkable woman ever.  All my life she has taken the brunt of my anger, my tears and my meltdowns.  Don’t get me wrong: my father has too, but I want to speak about that later.

My Mum is a rock that you would never think crumbles. I know this isn’t true and I know that many times she has crumbled.  It has been down to the fight she has put up not just for me, but for all my siblings. You see, I am one of 7 children and although many of us have our problems and medical conditions, I was unique.  I don’t believe parenting is ever an easy job, but when you have a child like me, you have to think ahead of everything you do and say, or you get Taz (which I will explain later). When you get Taz, you get tears, frustration and disappointment, not only my own but my mum’s.  She has cried because I hurt her feelings, because she has so desperately wanted to help me, and just because of lot of things.  Frustration came when she couldn’t help or professionals wouldn’t listen, and disappointment because she never knew what to do at times. With that, you also get love, admiration, strength, an amazing smile and laughter.

I know it hurts when I blame her, or scream and shout, or don’t seem to appreciate her help.  But it also hurts me as I do these things.  And she deals with it because she understands.  I think sometimes you take it out on those you love most.  So you see, my mum is remarkable.

Now to my Dad, and this is where Taz comes in. My Aspergers has been just as hard for him, and at first he found it difficult to help me.  Then he struck on something that works to this day.  You see, for every little quirk I have shown or every period of obsession, my dad has had a way to describe what sort of mood I am putting across. My dad has all these little nicknames for me and now that I am older if he says one of them to me, I know I am not being myself, or not being very nice/calm.

It started when I was young.  I had this need for independence, but also this sensory issue with clothes, specifically tops.  Every morning I tried to dress myself and would go into my parents’ room shouting, ‘Dad, fixmatop.’ When he did, I often shouted it again and again, this time not because it was on wrong but because it hurt me, so I developed this name and others to describe situations I went through. Then came the names to describe my actions and I eventually became known as his little devil, because it made my little meltdowns a little lighthearted, so much so that one day my mum bought my dad a devil teddy and when I came home it had a label across its head saying my real name.

Then there were the times when I’d be calm and suddenly just change moods and fly around, slamming doors, etc.  This is how I became Taz.  Or when I was fine and some small thing suddenly made me upset with people, I was known as the crazy farmer (from an old advert).  I tried to develop coping methods of my own, but if it was obvious I was not coping, my dad would notice this and explain it for me.  He would say, ‘Taz,’ or whatever, and I would suddenly understand what was happening emotionally.

Now for my siblings.  They are extraordinary.  For the older three, I was a little strange to begin with as they had grown up like normal siblings, with normal sibling squabbles.  Then there was me.  I couldn’t let a normal fight go.  I always thought more of it, took things the wrong way, looked at their friends strangely.  But as they grew into teenagers, they also grew to understand my differences.  My eldest sister took me with her on play dates with her friend’s step-son and I stayed at her house many times.  We became very close as a result.  The youngest of my two older brothers took me swimming weekly and taught me to cook from the age of seven.  My eldest brother was int he army, but when  he came home he took me to school and spoiled me.  I was always treated as an equal.

They lost friends for me, got bullied because of me, but to them, I was just their sister and they could accept me for being different.  I am especially close to my youngest sister.  She was once asked what it was like having a sister with Asperger’s Syndrome; she said it was the same as having any other sister.  They asked if it was hard when I took things too seriously; she said she would just tell me straight like she would with anyone else, although she does know not to take it too far.  So you see, to my siblings, I am equal, though different.

That’s my amazing family.  Where would I be without them?

What about your family?

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.

 

]]>
https://conditionalpublications.com/2012/12/29/family-where-would-we-be-without-them-an-autism-story/feed/ 0
Asperger’s and Mania – A Worried Mother’s Story https://conditionalpublications.com/2012/02/13/aspergers-and-mania-a-worried-mothers-story/ https://conditionalpublications.com/2012/02/13/aspergers-and-mania-a-worried-mothers-story/#comments Mon, 13 Feb 2012 09:23:52 +0000 http://conditionalpublications.com/?p=782 The writer of this story has chosen to remain anonymous

I am writing about my 16-year-old son who struggles with cyclothymia and Asperger’s. He does very well as long as he is properly medicated, although he continues to have anxiety. His biggest issue is with medication compliance because he does not like the sexual side effects. He is not sexually active yet but I understand that, as a young man, he wants to know that his stuff works.

Without meds, he becomes paranoid, then obsessive – particularly about food. About once a year he becomes a vegetarian. He perseverates on communism, socialism, fish, and Kurt Cobain, among other things. In the past, this has hurt him socially as it tends to alienate him from friends and sometimes family. He has also struggled with sexuality when manic, unknowingly making himself a target for child predators on the internet. I am forever having to rescue him. He also has a consistent level of gradiosity, which could stem from both mania and Asperger’s.

He has a long-term girlfriend, which really helps keep him on track with his meds because she has seen him when he’s off and doesn’t like it. But I worry about his future even with her (they are already discussing marriage) because I know that she can’t truly understand what she’s dealing with until she has lived with it. And they are so young.

When manic, he has turned to cutting, marijuana, alcohol and homosexuality, as well as extreme political groups.

He is a fascinating, intelligent, talented, good-looking, kind-hearted and wonderful person and I resent the mental illness’ interference in his life.

~ Concerned Mom

]]>
https://conditionalpublications.com/2012/02/13/aspergers-and-mania-a-worried-mothers-story/feed/ 4
Autism Is Just Another Personality Type – It’s Not Always a Problem https://conditionalpublications.com/2011/05/29/autism-is-just-another-personality-type-its-not-always-a-problem/ https://conditionalpublications.com/2011/05/29/autism-is-just-another-personality-type-its-not-always-a-problem/#comments Sun, 29 May 2011 22:03:25 +0000 http://conditionalpublications.com/?p=437 I need to put a disclaimer here before I go on: YES, there are extreme cases of autism where it is definitely a problem – where it absolutely interferes with the person’s ability to function in life, and where it can cause them to be a danger to him/herself and to others.  However, contrary to what the media would have you believe, this only applies to the minority of autistics, while the majority of us might not be diagnosed for years because we’ve found a way to blend in enough with society to be mainly ignored.  Just as Tourette’s is not all about swearing, OCD is not all about hand-washing, and ADHD is not all about having screaming fits and smashing up your property, so too is Autism much more than the stereotypes you see on television.

What’s more is that the books on the subject would have you believe Autism is something that only affects children – but what happens to these children when they grow up?  Do they somehow grow out of it?  Or do they just get forgotten?

As a child, I was very socially ‘difficult’.  In fact, the word ‘difficult’ was attached to me so many times that I grew to resent it.  It implied I was being stubborn and willful, when in fact I just could not help the way I was at the time – indeed, I couldn’t understand why what I was doing was so wrong.  As far as I was concerned, all I was doing was being myself.

I felt uncomfortable with friends, and yet I hated the loneliness this brought.  The truth is I am an intensely social creature, but as a child, the social expectations were lost on me, I never seemed to do the ‘right’ thing and people were frighteningly unpredictable.  I preferred to imagine they were with me, in my own private time, where I could control what they said, like a script with actors.  That way, no one could shock or hurt me.

I also developed a great passion for reading, where I would sink into the stories, fall in love with the characters, or even become the characters and erase myself from existence.  I often found it confusing being in real life social situations because it felt like the people around me had no idea what a remarkable adventurous little girl I really was…inside, in my head.

I loved routine.   If things went contrary to the plans I had mentally and emotionally prepped myself for, I felt so anxious I was prone to fits.  I would grow desperately unhappy, cry, scream, all because my parents had decided we needed to wait until the following day to go do something I was expecting to do now.  And I couldn’t explain to anyone why it left me in such a state of panic, which only served to panic me more.

In school, I could not stop talking, could not ‘behave’, could not focus on anything that didn’t particularly interest me, could not, could not, could not….

What could I do?

I was passionate about the things that excited me.  Sure, they were often strange things, like my obsession with sharks, or black holes (at the age of 6), or the etymology of the English language (or any language, for that matter).  I felt great pleasure in working out the Quadratic Equation in Algebra class.  I loved working out detective stories.  I practised singing along with my favourite songs constantly until I could perfectly mimic all intonation and improvisation.  I never ran out of things to say, even if it was about strange esoteric subjects.  I knew everything there was to know about the Pet Shop Boys.  I could recite the entirety of Disney’s Aladdin and Hocus Pocus for you without the films playing.  I could speed-read, getting through a book or two a day, all year long.  I could always entertain myself, without the need for outside stimulus or company.  I had high ethical standards, which led to a great sense of loyalty toward those I loved.

The point is: some of it was a little crazy (and in fact still is).  But some of it has been – dare I say it? – useful.

If not for my stubborn perserverence, I wouldn’t be here starting this website or this company.  Check Mates would not exist.  If not for my loyalty and constant chatter, I wouldn’t have managed to make all these remarkable friends I’ve accumulated over the years, without whom the book could not have been made.  Without my love for reading, again, the book would not be published.  Without my tendancy to sink inside myself, I would never have become a writer.

And that’s just me.  I have since learned to integrate myself into the world – learned to ‘fake it until I made it’, studying and imitating those I meet until I blend in more.  I have reached a point in life where I am happily married, a mother, working a stable job that I enjoy and I have many great friends.  I believe my stubbornness is exactly what brought me to this place – because there are all too many people out there who came from the same position I did and have not been so lucky.

They have been too singled out in school, assimilated the abuse and the negative labels and accepted that they are outsiders.  They have struggled in school systems built for people who just don’t think like them.

Because that’s all Autism really is, in its so-called ‘higher-functioning’ form.  It’s a different brain type, a different way of thinking.  We learn differently, we require more routine and preparation, we need information to be delivered to us with some relevance to our natural passions in life, we need more focus  and patience – but then, aren’t there plenty of people out there without Autism who are the same way?

Over the years I have heard people claim that Autism is ‘brain damage’, perhaps caused by some problem in childbirth, or the result of an abusive or neglectful childhood upbringing – that it is a disability.  Yes, sometimes it is.  But for the rest of us, I strongly believe that all we need is the encouragement to unlock our natural potential.  We are brilliant creatures with talent and imagination and intelligence, just like anyone else in the world.  When we’re given half a chance, just watch how far we fly.

To put things into perspective, I always believed others were just like me, until I read Temple Grandin’s Thinking in Pictures, where she detailed what it was like to be Autistic, stating repeatedly that ‘the general public do not think this way’.  I found myself relating to everything she said and asking myself in shock, ‘That’s not how the rest of the world are??’

Perhaps the real key to dealing with the more maleable forms of Autism is to stop trying to force us into typical social conventions and instead try thinking the way we do.  I’ve always found it impossible to imagine what it must be like to think any other way, so I can understand why it would be so hard to understand my way of being.  But it really isn’t so strange if you’re living it.

Those of us who can find ways to function in the world do not have ‘disorders’ that need to be cured with medications.  In such cases, it’s not a ‘mental illness’ or a ‘syndrome’.  It’s an entire personality type.  It’s who I am.  To ask me to take drugs to change it would be like asking me to stop being me.  And frankly, I can think of a long list of people who like me being me – myself at the top of that list!  Why should I have to go against my nature just to fit in?  Why do we find difference so thereatening that we demand conformity, despite the fact that all our great leaders, thinkers and artists have been great because they were so ‘outside’?

To me, this is normal.  So where’s the pill that makes you think like me?

Just something to consider….

Vrinda Pendred

Editor & Founder of Conditional Publications

Don’t forget to get your copy of Check Mates: A Collection of Fiction, Poetry and Artwork about Obsessive-Compulsive Disorder, by People with OCD – on Amazon and Amazon Kindle

]]>
https://conditionalpublications.com/2011/05/29/autism-is-just-another-personality-type-its-not-always-a-problem/feed/ 11