Asperger Syndrome

Hanna Gadsby's interview on being on the Autism Spectrum is something to be watched. So many girls/women are not diagnosed as being Aspergers or on the Autism Spectrum because they can camouflage easier than boys. Their literacy levels are usually higher, and other differences to boys/men.

As it is Autism Awareness Month I have decided to share my story. It will probably be a long post but I am known for writing a tome when passionate about a subject. SO here goes...

I identify as Asperger Syndrome (high-functioning Autism) and have so for many years. I remember I was in a Wollongong University lecture on Educating Children with Special Needs as part of my Bachelor of Education.

A slide was put up showing some of the key features of someone with Autism. I put my hand up and said that I identified with all of the traits listed. I was told that if I was on the Autism Spectrum then I 'wouldn't be here', a university student. I felt shocked and dismayed and thought 'she must know better than me, she's a tenured lecturer', and dropped the subject.

Growing up I always had problems with social occasions such as camp, parties, peer interaction. I was seen as 'Odd' and fixated on my own scholarly interests.

For a time that was Mathematics and my peers in primary school and some secondary school could find me working on Math puzzles in my Maths book like people now do Sudoku. I would write out all the main fractions (eg. 1/2, 1/3, 1/4) by long division and obsess over reading several books a day, sometimes reading whilst walking to school - which once led to my head crashing into the front of a Mac truck!

When I started University I struggled - a LOT. I was put into groups to work on assignments and I was more an independent worker and struggled with not being taken advantage of, or bullied into doing things that didn't sit well with me.

I had difficulty with organisation (time spent on each subject, timetables, assignments) in primary, secondary and tertiary level and often had to cram for assignments the night before they were due. I'd also fixate on my mistakes, often becoming depressed if I didn't get a high mark. This wasn't helped by an adult close to me belittling me if I didn't get 100% - even when I got 98% on a test that the second highest score was 60% and the rest failed - I was still told that I 'should have got 100%.

I would retreat into my books and often ignored life that was going on around me. In class, I would finish my work fast and then stare out the window or into space, in my own little world. I didn't make a lot of effort with my classmates and they just didn't understand me or what made me tick. I had moved so many times that I didn't bother making investments in friendships as it led to heartbreak when I did.

I remember a meltdown at a year 6 farewell party. I wanted to put the streamers (paper ribbon decorations) in a certain pattern and I was overruled. I said 'nobody likes me' and burst into tears. I was told it wasn't true but I felt rejected on a regular basis and distanced myself from my peers on a daily basis. When I acted naturally I was teased and when I went to Highschool I carried a briefcase in Year 7, convincing my mum to let me have one. I don't know why I wanted one but I persisted despite the calluses I developed on my fingers.

In high school, I ignored attention from boys. They were like aliens to me and there were only two boys that I ever had a crush on but never let them know - on purpose. I didn't develop until my early 20s and had very low self-esteem and just decided to focus on school work, my family and my future.

Even when I was 18 I was oblivious of the boys who later told me that they had a crush on me. I was friends with more boys than girls at times and wasn't really a 'girly girl', and to be honest, though most of my peers were shallow and not that interesting. I wasn't going through puberty and experiencing the heightened hormones and sex drive so I didn't experience the same feelings as they did. I had the body of a 10-year-old when I was 13, of an underdeveloped 12-year-old when I was 13-20

I had a best friend who lived next to me and with my difficult home life, I didn't want others to see what I was living with day to day. I had three good friends who knew a little of what was going on but the rest were oblivious. They would see me break down and cry now and then, but I wasn't allowed to say why.

You didn't talk about what went on at home. Family life was private and I just seemed odder. Some girls tried to work out what was going on but I just went quiet and they soon gave up. I confided in my best friend, much to her credit she was empathetic and was a great confidant. I'll always be thankful for her friendship. It meant more than she can ever know. I probably would have committed suicide if it hadn't been for her. Life was pretty hard and lonely and I didn't know why I was so different.

I remember having my behaviour 'corrected'. When stressed I couldn't keep eye contact and was disciplined out of that trait for the most part. I remember looking the person straight in the eyes and biting the inside of my cheeks to stop from crying or saying anything or it would just get worse. I was told be 'be normal' and not stand out. I was like a square peg in a round hole - I just didn't fit in.

When I was a substitute teacher I was often put in the most difficult classes. I would get a phone call in the morning asking me if I wanted to work at XYZ school in a set class. Usually, this was an IM class (mild intellectual disability) which included children with Autism, Aspergers. ADHD, low IQ students, and those struggling due to low levels of literacy and/or numeracy.

I loved working with these children and often the other teachers were shocked how well I was managing class discipline and creating active learning and enjoyment within the classroom. I was a very enthusiastic, engaging and inspiring teacher that children loved spending time with. It physically and emotionally drained me but I loved teaching and used Educational Games as motivation and rewards. SILENT BALL was one of the favourite games and was simple as a blown up balloon and two rules:

1. Don't make a noise

2. Don't let the balloon hit the ground.

Teachers would pop their heads in the room because it was SO QUIET and the kids loved other games such as TIMETABLE SHOOTOUT and STEPPING STONE game.

At University I did meet some people with similar traits to me. Many of them were boys that played Dungeons and Dragons and had fixated on personal interests (Geometry, Archeology, Language, Space, etc) and I really found them interesting.

At a friend's encouragement, I joined the Gaming Guild and took part in a convention at another University and felt that I had found my tribe. Most were on the spectrum or just highly intelligent and had amazing skills of creativity and problem solving when it came to AD&D and similar games.

As a child and young adult, I had difficulty telling when someone was lying to me, or telling a joke without telling me it was a joke. I'd get confused when people got angry when I talked incessantly about a topic of interest that they didn't have. Unbeknownst to me, their eyes would glaze over and sometimes sign until they gave up being patient and kind and would say that they were busy and had to go.

I didn't give the correct facial responses. Sometimes if someone told me a sad story I would accidentally smile - which as you can understand made them upset. It was involuntary and after a while, I would beat myself up for it when I saw their discomfort at my strange response.

It wasn't until a friend described Aspergers and that he identified as one that I really researched it and had an A-HA moment and realised that I, in fact, was someone with Aspergers Syndrome and that wasn't a bad thing.

Basically, Asperger Syndrome is named after a man called Hans Asperger, an Austrian paediatrician who saw similar traits to his own in children that he came into contact with through his job. He saw that they were high functioning autistic and that there was a spectrum, with some people being at one end of the spectrum (low functioning) and others at the other end (high functioning). People not on the spectrum are known as 'Neurotypicals' as people on the spectrum are Neurologically Atypical.

All autistic people share certain difficulties, but being autistic will affect them in different ways. Some people with Asperger syndrome also have mental health issues or other conditions, meaning people need different levels and types of support.

I used to suffer from Clinical Depression, and now take medication for mood stabilisation. Part of it was the chronic illness (Panhypopituitarism, Chronic Fatigue) and pain (Congenital Talipes - Club Feet post-operations) plus the stigma of being 'an odd duck' in a pond full of swans.

I have never tried to kill myself but I did have dark thoughts and some days didn't want to get out of bed and would fake being sick so I could stay home from school, usually after a bad experience the previous day.

When I get stressed my body shuts down due to the Adrenal Insufficiency I was born with. I wasn't diagnosed until I was 13 and then had to learn Endocrinology to be better able to manage my disease. I would get painful migraines on a regular basis, come home and cry that the children were too noisy and get into bed and cover my eyes and try to rest. I was exhausted every day of school thanks to Chronic Fatigue and just miserable a lot of the time. I would often pretend to be a happy child but wore a mask hiding most of my sadness and self-loathing.

At University and since I have sought out mental health specialists and have spent some time in mental health wards at hospitals after a mental breakdown happened. Yes, that is a huge thing to admit but I want to be honest.

Admission usually resulted from being severely stressed over an incident or mentally and physically exhausted. Sometimes it was after someone tried to suicide or self-harm. One time it was because I failed Mathematics course in my Bachelor of Education.

You would be surprised just how MANY people in those mental health wards displayed Autistic traits. I was able to help a great many of them accept themselves and learn to be happy in their own skin.

I see a psychiatrist and psychologist plus have many friends and some family members to confide to and seek advice. I write a private journal where I work through thought processes or write about an event or situation to de-stress and reduce tension. Looking back over past helps me to put things into perspective. Something I was ranting and raving over in my 20s was trivial and I totally overreacted.

After re-reading my journal entries and reading self-help books and websites I have learned not to 'sweat the small stuff' and try to breathe deeply, clear my mind and find a non-harmful way of reducing my stress and frustration. Note - I will soon be getting a punching bag to help with this. I already have boxing gloves and boxing pads but no one to practice with so a punching bag sounds like a plan.

If you know someone on the Autism Spectrum please show them empathy and understand that they can't think like you although they can move along the spectrum as I did. I learned to camouflage, keep eye contact when stressed, learn conflict resolution skills and to stand up for what I believe in. I am still a work in progress but most people don't class me as on the spectrum, just a little eccentric 😃

Thanks for reading and 'live long and prosper'

Vanessa

(cue music)

Putting my feet up after a long two days doing Walk For Autism. You can see how swollen my feet are. Can you see my little ‘caterpillar’ surgery scar from when they operated on my feet, broke bones, chiselled them, re-set them with a surgical staple and then plastered my feet from my toes to my hips. I had to re-learn how to walk and have weak ankles and need heel reconstruction surgery.

One of the reasons I am motivated to do some intensive walking 🚶‍♀️ is to help me lose weight so I can have the operation. Wish me luck! 6 days and 60,000 steps to go until April 7th.

If you my friends and family could donate $1 (one-off) and help me get from $92 to $100 I would be overjoyed.

https://www.walkforautism.org.au/fundraiser/vanessapike-russell

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I’ve never thought of lighten / dull the scars on my feet.

I’ve never thought of doing that (helping lighten / dull the scars). Mum used the words ‘your little caterpillars’ caterpillars 🐛 and encouraged me to see them not as something to hate about myself but something to thankful for. 

I used to walk with my feet turned in together, knock kneed, and after the operation my feet were almost corrected. I used to love the ‘6 million dollar man’ TV 📺 show. ‘ we can rebuild you’ theme. Mum smiled and called me her ‘6 Million Dollar Girl’.

When I think about it, as traumatic as it was waking up and screaming in pain after the reconstruction operation, I am so thankful that mum begged the Orthopaedic Surgeon ‘there must be something you can do’ after the initial operations failed. 

She took me to a conference of Orthopaedic surgeons. They probed and prodded my feet, twisting and flexing and hurting me, seeing how much flexibility and movement they had. 

They talked amongst themselves like I wasn’t there, then turned to mum and said, ‘yes - there is something we can do but it will be very invasive (understatement!!) and it should correct the position of her feet and help her to walk better. 

It was agonising for her to have to see me go through the operation plus waking up and screaming with the pain. I was 9 years old and remember her sitting beside the bed for hours l, crying and telling me the pain and discomfort would all be worth it, and helping me to re-learn to walk and helping me post-operation as I was in a wheelchair for months.

To think of going through that process again to have heel reconstruction surgery fills me with angst and dread but it will happen one day. I need a house like my last one that was wheelchair friendly. In need to lose 20-30 kilos so it isn’t as damaging to my feet 🦶 

So In some ways the scars are a badge of courage and not something to be ashamed of.

Does that make sense? 🙂

 Mum used the words ‘your little caterpillars’ caterpillars 🐛 and encouraged me to see them not as something to hate about myself but something to thankful for.

I used to walk with my feet turned in together, knock kneed, and after the operation my feet were almost corrected. I used to love the ‘6 million dollar man’ TV 📺 show. ‘ we can rebuild you’ theme. Mum smiled and called me her ‘6 Million Dollar Girl’.

When I think about it, as traumatic as it was waking up and screaming in pain after the reconstruction operation, I am so thankful that mum begged the Orthopaedic Surgeon ‘there must be something you can do’ after the initial operations failed.

She took me to a conference of Orthopaedic surgeons. They probed and prodded my feet, twisting and flexing and hurting me, seeing how much flexibility and movement they had.

They talked amongst themselves like I wasn’t there, then turned to mum and said, ‘yes - there is something we can do but it will be very invasive (understatement!!) and it should correct the position of her feet and help her to walk better.

It was agonising for her to have to see me go through the operation plus waking up and screaming with the pain. I was 9 years old and remember her sitting beside the bed for hours l, crying and telling me the pain and discomfort would all be worth it, and helping me to re-learn to walk and helping me post-operation as I was in a wheelchair for months.

To think of going through that process again to have heel reconstruction surgery fills me with angst and dread but it will happen one day. I need a house like my last one that was wheelchair friendly. In need to lose 20-30 kilos so it isn’t as damaging to my feet 🦶

So In some ways the scars are a badge of courage and not something to be ashamed of.

Does that make sense? 🙂

Sometimes I have to cancel plans

I have a chronic disease called Panhypopituitarism. Five in every million people have my disease and it can be debilitating at times. Sometimes I have to cancel plans. Other times I push through with the plans and fall into a heap. Please don't judge people as being lazy when they are doing their best to get through life with a chronic illness. 

Article The Guilt of Feeling Well - by Sunny Amerman

I wanted to share an article written by someone with Congenital Panhypopituitarism - the Disease I was born with. I can relate to much of what she writes about in the article, especially the unpredictability of this disease, flare-ups and feeling guilty when I have to cancel plans because of my health. So little is known about this rare disease.

ARTICLE: The Guilt of Feeling Well - by Sunny Amerman

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The title of this article might seem absurd to most people, but those of us living with chronic illness won’t even do a double-take. Generally, people have good health that is consistent day-to-day, save for the occasional cold or flu, so this isn’t something most people even think to consider. It’s hard for most people to understand having energy some days, and feeling unwell on others for seemingly no reason at all.
Anyone living with the fatigue that accompanies many chronic illnesses can tell you that there is no such thing as “normal” for us. One day, we might wake up feeling like we can conquer the world, but we can not promise you that we’ll be able to get out of bed the next morning, or that we won’t have to cancel out plans for this evening thanks to a flare-up out of nowhere. 

That’s where a lot of this “grief” comes from; those nights when we have to cancel plans due to a sudden wave unanticipated exhaustion.
Of course, the fatigue is only one of many symptoms of chronic illnesses, but I’m focusing on it for this article as I have the most experience dealing with it due to my Panhypopituitarism and the Secondary Adrenal Insufficiency and numerous hormonal deficiencies caused by it. 

With Adrenal Insufficiency, the fatigue is brought on by complications with my adrenal glands, and it doesn’t take much to cause a flare-up. Even emotional stress has a real, physiological affect on my overall health that can be seen in lab tests. This is not a case of “mind over matter”, but a real physical symptom of a disorder that can be life-threatening. An imbalance in many of the hormones I am deficient in can cause debilitating bouts of fatigue, vertigo, and just general malaise as well. 

Every diagnosis that fits the label of chronic illness has its unique complications and some are harder to cope with than others, but fatigue is consistently one of the more debilitating symptoms, which is why I am choosing to focus on that for now.
Before I go any further, I want to clarify what exactly fatigue is. This is not tiredness or feeling sleepy. The Mighty has an excellent video explaining it. Please watch this. It’s short, and to the point:


Because the fatigue is so overwhelming, we simply can’t “tough it out”. Doing so might put us in danger of passing out, or falling over and injuring ourselves, and that’s despite the fact that it just physically feels awful. Even forcing myself to sit up during a particularly bad bout of fatigue makes me feel nauseous and shaky. Sometimes if it’s just minor fatigue spell, a cup of coffee can help get me through it, but that’s rare. Usually, I have no choice but to lay down to rest, even if I had planned to do something I was really excited for. I can’t tell you the number of times I have had to cancel outings with friends and family because of the fatigue alone. I have tried to push through it a few times, and I always wind up feeling miserable, so I’ve learned to listen to by body and rest when it demands it.

Of course, that carries some social consequences. To people who don’t understand our illnesses, it may seem like we are blowing them off if they see us going out and having fun one day, and cancelling plans with them the next. It can look like we’re making excuses not to see them, when in reality we’re sitting at home feeling like crap physically, and beating ourselves up emotionally because we had to cancel.
While that by itself is difficult, I personally find it even harder to cope with the guilt I feel when I’m having a good day. I lost by job because of the fatigue and vertigo spells that overwhelm me at unpredictable times. Because I am unable to keep a job thanks to these complications, I decided to apply for disability. The process is long, stressful, and disheartening. I have been denied twice already. My attorney and I are appealing to see a judge now. With all of this going on, it’s hard for me to appreciate those rare “good energy” days when I have them.

Despite the fact that I know that the symptoms I feel are real and do require rest at times, I can’t help but feel like a hypocrite when I cancel plans one day and go out on the town the next, and when I DO go out and have fun on those good days, I can’t help but grapple with the thought that I could easily be at work somewhere in that moment. There are some days when I feel like I COULD be at work bringing in some pay to help with bills and groceries. Unfortunately, days like that are very few and far in-between. It isn’t uncommon for me to go a couple of weeks without having a “good energy” day. Most of the time, I am so weak I can barely keep up with household chores, let alone a part-time job. I know that if I were to go out and get a job, no employer would put up with having such an unreliable employee. Having a regular schedule just does not work when you can’t predict when you will be stuck in bed.

This is a boatload of emotion for me, personally, and I have a feeling many of you can relate to it. It’s so hard to enjoy myself when I’m feeling well, because I know it must look like I’m lying about my bad days.
This may seem odd, but I have grappled with the feeling that I shouldn’t go out and enjoy those good days. I feel like if I don’t stay at home and keep with the appearance of being ill, people won’t believe that I really am unwell. I don’t do that to myself, of course. I make the most of those days when I have them, but I still have that pang of guilt, especially when I can tell someone is judging me for doing so. 

I don’t have a solution for this. As a matter of fact, I am currently seeing a therapist to help me cope with these thoughts and the depression brought on by them, as well as the depression from my hormonal imbalances courtesy of Panhypopititarism. I wish I had some advice to give those of you struggling with those thoughts as well, but as of right now, I’m at a loss just as much as you are. All I can say is, even though this is extremely rare and you are not likely to meet another person with this condition outside of the internet, you are not alone. I’m here, and I know how it feels. I’m always free to talk if you ever need to. You can reach me via any of the social media platforms listed under the “social media” menu at the top of this page. 

If you are on Facebook, check out this support group for Congenital Panhypopituitarism patients. If you do not have CPHP, but you struggle with other chronic illnesses, there are a plethora of amazing support groups on Facebook for you as well! My favorite out of all of them so far has been “MBMBaM Spoonies“, a group specifically for those of us with chronic illness who also happen to be fans of “My Brother, My Brother, and Me“. 

Even though I struggle with this guilt and shame, I always try to remember that this was not my fault. This was not my choice. These symptoms are real, and what I feel is real. My experiences are real, and my frustration is valid. Anyone who chooses not to believe this is ignorant, and I should really pity them for being unable to show compassion for someone enduring something that would likely break them.
I am physically weak as hell, but I am strongerthan they will ever be.
I just need to keep remembering that, and I hope you will as well.


Featured image courtesy of Pexels.com

Please read the article and view Sunny’s video on CPHP basics - an informative video on the disease

https://youtu.be/MPDvFMk8ZNY

Chronic Fatigue from Panhypopituitarism

Ableism

Sunny Amerman, of Insomnia Doodles and The Mighty author, wrote a post on her Insomnia Doodles blog on why she celebrated being approved for disability support by going bowling, titled:

Why I decided to celebrate winning my disability hearing by going bowling:

"I know that headline caused some eyebrows to jump towards the ceiling, so please allow me to explain:

Disabled ≠ Incapacitated

I repeat- Being disabled does not necessarily mean that you are physically incapacitated.

This is something I wish more people understood, and the taboo imposed on those of us with debilitating invisible conditions is so great that I honestly had to think long and hard about whether or not I was brave enough to write this article. I mulled over the idea, worrying about the potential backlash of ableism and judgement that might follow. When I realized just how afraid I was to write this, that’s when I knew I had to."

( Continue reading here.)

I think some people are going to learn a great deal from it and those like me who have Panhypopituitarism know that you might get a rare good day and most of the other are a struggle. It’s very important to socialise and to celebrate with friends, especially after a very long and drawn out process to being approved for disability support.

Like Sunny, I get ableist remarks from some people, mostly when I use my Mobility scooter. Just because I can walk short distances doesn’t mean I can do it all the time. I might look like I have fully functional feet because I wear Colorado boots every day of my life to lock my ankle so I don’t walk over my heels. I do walk for exercise but I often use my scooter for shopping trips and to carry my bags.

I have a bad neck and can’t drive due to a fall down 23 stairs and a car accident. I can’t turn my head most days and I have muscle wastage from the degenerated discs in my neck. I’ve had people make snide comments under their breath or straight to my face that I should ‘get of your fat ass and walk, you lazy bitch’. Yes, people can be very judgemental.

The last person who said so got an education in not judging a book by its cover when I explained my medical history and they apologised and gave me a hug and said it was amazing I was getting around with a smile despite Chronic pain and Chronic Illness. I usually don’t let people’s harsh words ruin my day but sometimes I decide to turn the situation into a learning experience.

I am trying to walk more, only on level ground or I twist my ankle and can’t walk at all. I signed up for Walk For Autism which starts tomorrow. 10,000 steps a day (roughly 6km) for 8 days - a mammoth task for me but I’m going to do my best - especially when it helps people with autism!

I use a mobility scooter to get around most days and whilst some people are downright rude and point fingers at me for being a 'young' woman (47 years old) riding a mobility scooter when I don't look disabled. 

I do find that if I put a smile on my face and apologise if I get too close to someone (usually their fault) and smile then most people smile back and say 'no problem'. It's all about the attitude in my experience. I put myself in their shoes. Having a moving vehicle getting close to pedestrians can be scary for the pedestrians.

I am so grateful for every kindness shown to me, which can be as small as a smile, stepping to the side so I can pass, or cars stopping so I can make it across traffic (something which can be hair-raising at times! I am very fortunate that the majority of people are nice and understanding. 

Mobility scooter accident

This afternoon I was on my way to Raby Bay to walk a friend’s dogs after doing 7,500 steps earlier in the day. On the way, on the ‘Rainbow Serpent’ pathway from the Cleveland Library to the Raby Bay Harbour / Marina, I had a cyclist ram my scooter and cause 3cm worth of damage to the front of my mobility scooter where his wheel crashed into the plastic to the right of the left front wheel.

We collided twice and I got a small whiplash, thrown forward and then back, wrenching my back and neck and went into shock which lasted for hours.

I’m about to stress dose with some Cortisone as I feel adrenal crisis due to the physical and psychological shock I experienced. Google ‘Panhypopituitarism’ and shock and you’ll read how people with my disease can die from an adrenal crisis.

It wasn’t entirely his fault as the hedges block off the view of someone coming around the corner but he was going VERY fast and crashed his wheel in between my left wheel and the front of the scooter which has a black handle.

The plastic has shattered and you can see the usually hidden part of the front place handle through the cream plastic casing. I was severely shaken up with slight whiplash and I went into shock, hands and spine-tingling and felt nauseous.

The young man riding the bicycle seemed very remorseful and kept asking if I was ok but he was the one that was launched forward and hit the front of my scooter and almost smashed into my face 😯
I asked him to go to the hospital to get checked out. but he said he was fine.

I will take a photo of the damage to the scooter in the morning as it is already 7.23pm and my iPhone 6S Plus has a dodgy camera that has 90% of images look like my hands are shaking from side to side. Annoying because I love taking photos and it only stops when I hold a magnet near the camera lens. Weird, right? I found this solution on a google search.

But I digress, photo in the morning and I’ll be visiting the council and demanding they reduce the hight of the hedge before the next accident is fatal. The young man could have become a quadriplegic if he had fallen. Not good enough!

I’m aching from head to toe and still a little shaken. I’m about to get into the bath and then get into bed with my heated back and shoulder blanket and recover from a very eventful day. I am 1, 428 steps short of 10,000 but everyone said I should just head home and recover so I relented even though it annoyed me that I was so close. I will add it onto tomorrow’s 10,000 steps. Wish me luck!

Time to go self-care and hope I can get out of bed in the morning.

Night!

Vanessa