Sensory, empathy, fight and flight

Hunting Happiness Project

Sensory, empathy, fight and flight

As I was buttering my toast this morning I felt a gentle breeze blow across my arm. The kitchen window was open; there was the smell of damp grass mingled in the cool breeze. This combination of coolness, scent and light touch instantly took me into a visual replay from when I was about 10 years old.

This memory was a happy memory of a camping holiday. I was quite happy being back there with Mom, Dad and my brother. I was lying on the top bunk in our little touring caravan. Dad was making toast outside and passing it to Mom so she could butter it just the way I liked it, while it was still piping hot.

(I wouldn’t eat toast if it wasn’t buttered correctly; I didn’t like the texture…hehe)

Now usually the smell of toast takes me back to my Nan’s kitchen. So I pondered on the differences that the emotional and visual response had through my sensory system. My visuals are as clear as a film; it’s as if I step back in time. Sometimes though, if it’s a negative experience, I have no visuals, I have blank spots and just emotional reactions that I cannot place or understand. It was this that made me stop and think as I know I can misplace feelings especially fear.

What I asked myself…

Could it be that such a subtle change can cause me such a different response?

Does this happen throughout my days without me noticing?

Is this another thing that affect my emotional and mental state?

What does this mean to me personally?

I also thought about how I can be perfectly happy some days and then for no reason I can understand suddenly become so anxious and insecure I can barely function.

I then processed deeper

Those who know a bit about the Autism Spectrum will have heard of the fight or flight response. Fear is what makes all people either run and hide or fight for what they believe in. Those of us with sensory processing disorder (SPD) can’t always understand the feelings or emotional reaction we get from fear. We can also misplace fear with other stimulus. I have been told that I seem aloof; this is how I am perceived in a group of people. I am not an unfriendly person, those who know me know I love being with others. I just struggle to process when there is too much going on. This makes me shy away so I can feel safe.

My mind is puzzling all this out for my own benefit at the moment.

I know from past experience that the only way I have been able to not let the actions of others or the ways of this world affect me, was to isolate myself and switch off to caring about people. It was a sad a lonely place that I don’t ever want to return to. But in not caring about people I also stopped caring what people thought of me, why I wasn’t part of things and why I was always left out. When I didn’t care, nothing seemed to matter.

Through allowing myself to care, to feel, to switch on my heart means I experience empathy at a whole new level. But it also means I am not alone and I have found deep friendship. Allowing myself to be in the shoes of another and feeling the pain they carry means I feel it too. I have found prayer helps me most of the time. However on my not so good days I am unable to release this pain through prayer because I am looping too much in my mind. These days I have to retreat and not add anymore confusion to filter through.

I know that I am an extremely sensitive person. I can’t always process the overload of emotional and sensory input. I choose to not hide anymore, I choose to ask questions and seek answers. I choose to find others who are like me so I no longer feel alone in the world. Through the internet I have met many people who are like me, spiritual, sensitive, loving people who courageously choose to keep giving.

I wrote a post back in 2010 called Toys and Empathy.

It talks about how as a small child I watched some film footage of starving children in a third world country. The emotional and physical pain I carried from this visual was so intense it pushed me to giving all my toys to charity in the hope I would save a child’s life.

In that post I also said this…

I think that the lack of empathy thing is just a shut down mechanism of self protection because emotion is so intense…

I just know that when I gave my toys away it was because I cared deeply for children I would never meet, and I was willing to go without my faithful friends so they would live. I don’t believe that I lack empathy and I don’t believe other Aspies do either. But this is just my understanding.

I read a post recently that is a new theory written by a professional. It backs up some of what I am saying here. Aspies do not lack empathy; we switch off because we feel too much.

Quote from the post…

A groundbreaking study suggests people with autism-spectrum disorders such as Asperger’s do not lack empathy—rather they feel others’ emotions too intensely to cope.

Link to that post… A Radical New Autism Theory

I am still processing all this information.

Once I pull my thoughts together and find a way of helping myself through this I will share more. I can see that as a small child I seemed to know myself so much better. It is trying to fit into what’s considered the social norm that has chipped away at everything I once was. But it has also given me who I am today.

Thank you for reading. Love and hugs. xx

The Aspie Coach

Doodles and Dragons

I created this doodle yesterday after a friend inspired me. Doodling this was like therapy for me. I combined two things that teachers had punished me for as a child. Doodling and my special interest/love of/passion for dragons and monsters.

When my sister saw this doodle she said,

“Looks like it was very relaxing to draw sis.

Scary things are looking at me!!!“

Which was just perfect. It expressed just how I felt.

The constant eyes, staring into me, causing me indescribable fear. Always watching me ready to ruler my knuckles, stand me in a corner, rip up my work. Over 30 years later and I am finally able to release this fear of wrongness. I’m glad that this doodle seems scary as that’s the emotion I was releasing.

Children and adults on the spectrum find comfort in our special interests. Yes, we can seem obsessive at times but a lot of us can learn to understand time and place. Some of us struggle to form words, especially when we are in sensory overload. Being able to express in a different way gives us the ability to communicate our discomfort. Comic strips are used a lot now with special needs children to aid social understanding.

Link here… “What is comic strip conversation?”

As a very young child I was caused fear of both my outlets, back then no one really knew what Aspergers was. I was a quiet hardworking child, with learning difficulties and I struggled to fit into school routine every day. School to me meant two things, total boredom or feeling terrified.

There are so many adults on the spectrum who still can’t find words and are still learning to communicate the best they can. If what happened to us in school, and what happened to our undiagnosed Autie/Aspie parents, was happening today….

Well it just wouldn’t be happening today, would it?

For more background on my doodles and dragons follow this link.

Stories and Doodles

 

I am enough

http://www.facebook.com/AnimalsSayItBest

I am enough

by Alienhippy

Gentle guide and lover of my soul, with you I need no other.

In you I see a reflection, a growing of spirit.

You are my strength, you nurture me from within.

Only you can quench my undying thirst.

~

Hidden warmth, a refreshing breath.

I sense your lips of truth.

Giving me rest when all I am is spinning in confusion.

Patiently you wait for me and spur me on in whispers.

~

You are there when I awaken from my darkness.

In my own time, through your love, I am given new direction.

No fear as I look to you, I know you walk at my side.

Safe and secure in your arms the battle is won.

~

Your fruit, your streams refresh my soul.

I long for you alone.

Your tender hand lifts my downcast gaze, restoring my dream.

With the mountain’s peak, my heart will grasp new blessings.

~

Bursting forth an overflow from your unconditional love.

This beauty that chases me, I have no hiding place from it.

I cannot escape for you created my ways.

You meet me in my silence and comfort me in my torment.

~

One way remains.

To step into the treasured place that is your heart, my home.

To know the depth of your love, accepting that I am enough.

7 packs of hardwood

http://www.facebook.com/UpsDownsRoundabouts

This week I was met with a dilemma. To do what is seen as right and expected of me or to do what my inner voice was calling me to do. For a reasonably intelligent woman I can be remarkably stupid at times. This is how the story goes.

For the last seven weeks I have dragged my butt to an ASD parenting group. Our psychologist said she was reluctant about sending me but maybe, just maybe there might be some therapies that I can implement in some way. She had also said that my positive outlook and the information I had shared with her was extremely refreshing. She even asked me to think about re-writing a booklet that she has to give to teens that have just been diagnosed with Aspergers. I felt very honoured and also humbled by this lovely lady and her heart to find the best way forward for my little *CAL.

*CAL is going to a social development group that is helping her, so I thought that this might be something that would be helpful for me. I will try anything as I believe there are lessons everywhere when we are open to learning. I also thought that I might make a few friends with people walking a similar path, sharing a similar journey.

The first two weeks at the ASD parenting group I kept quiet, I did what every female Aspie does. I sussed them out. I only spoke when I needed to and I made myself fit just enough to pass as NT. By the time we are in our mid twenties most Aspie girls have figured this out. We learn to act and wear a mask, we learn to look social and connected eventhough we still feel lost, alone and incredibly vulnerable.

The third week things changed, I had already spoken with the therapist and the psychologist that are running this course. I had spoken to them because the social activities were not great for me and I was having to escape to the loo to desensitize. The third week I told the class, I let them all know… “I’m not just here as a parent to ASD, I am Autistic. I live the life of a person on the spectrum. I am an adult with Aspergers.”

Things didn’t change much, I still had to listen to the negative stories and hold my tongue each time the words cure, fix, change came about. Also the… Why can’t she/he just…? When will she/he stop…? I am so fed-up of Autism, why did it…?

See this is where I feel that I fail.

I have so much empathy, patience, compassion and love for parents who are truly struggling to find the best ways to help their babies. But when I have to listen week in and week out to how someone like me should not have been born. Or if there was a home I could go and live in and come out at weekends. Why is it so hard for me to just sit still? Why can’t I just be who everyone else wants me to be? Or WHY can’t I just dry myself with a bath towel like a normal person? Why can’t I just enjoy going shopping and stop with all the whining?

I know that these things are not aimed at me, but it’s so hard to not feel that they are. I haven’t been quiet, I have voiced the whys in the kindest and most respectful way I could. Maybe some of them heard, I hope so. There is always a maybe and there is always hope.

This week as I drove to my group all the way there I prayed.

Please God help me be loving, help me be kind, help me be patient. Father, I really don’t want to go I would so much rather be home doing my DIY. But maybe there is a reason why I am there and maybe this week I will understand this reason. Please shield me and help me to be strong. Protect me from absorbing the negative words and help me to keep knowing that my Mom loved me unconditionally, she didn’t feel that way about me. Help me to have the heart to see past the words and feel the pain that these parents carry. Give me the words to bring comfort to them and give me the wisdom to know when not to speak.

I parked up on the road about a 3 minute walk from the building.

I took a deep breath and looked at the clock. I was already late and I didn’t know what room I needed to go to. Panic rose up inside of me. Then I spotted about ten feet away from my car a pile of wood. I needed a nice piece of wood for some new coat hooks for *AJ’s bedroom. “No Lisa, you are trying to de-clutter not collect more.” 

This is how my brain will puzzle

I get out of my car, put my folder and coffee on the roof while I put on my coat and grab my handbag. From this angle I could see that there were also packs of wood standing up the lamppost.

Could it be that someone had thrown out brand new packs of hardwood flooring?

Yes, they have!

I looked through the packs, there were seven packs of hardwood flooring. All of them sealed and new, enough to re-floor my reception area. I freeze and go off into my own world of thoughts.

What should I do? Is this God telling me to go home and do my DIY like I prayed about? But I am already late and I have to go to this group it might help me, I might learn something. But I really hate going to this group, it is so draining for me. I always switch off after the first two hours because I emotionally shutdown. But maybe it will be different this week, maybe someone might be friendly and actually interested in hearing about what it’s like to be over sensitive to sensory experiences. Maybe they might want to know about what it is like to see all the details and miss the bigger picture. Maybe? But look at this wood, it’s so pretty and it’s all here ready to be collected by the council and taken to the dump. I don’t know what to do? I feel confused now, what should I do?

I look back at my car and again at the time and then once more at the wood.

Ok, you drove all this way to go to this ASD parenting class, do what you are meant to do. If it is still here when you get back then put it in the car and take it home. You are running late it will take at least fifteen more minutes to get this into the car. Do you really want to walk in and have everyone look at you because you are late and disturbing the group?

The class was horrible.

I switched off after the first hour and sent fb messages to my friends so I could stay positive. When I got back to my car the wood was gone. I looked it up at my local DIY store £45 per pack. £315 worth of high quality flooring that I walked away from because I can’t break the stupid rules.

My lesson…What I learned

I am more than Autism, I’m an encyclopaedia of my own Aspie traits. I don’t need lessons on how to parent my Aspie kids, I love them more than life itself I will always find what is best for them. What I do need is… I need to be accepted and respected for who I am and so does every person on the spectrum. We might be odd and quirky, we might be a little different but to us we are fine just the way we are. It’s when we are expected to fit into a world that tells us we are wrong that the problems start. I said to my friend the other day, “If I was a shepherd and I spent my days out in a field talking to and looking after my sheep, I wouldn’t have to try to fit I’d fit just fine. It’s people pressure and the push to conform into a mould that is not mine that causes me pain.”

Next time God leaves me a pile of wood; I’ll listen with my heart and not loop in my head.

I’m sick of always doing what is expected of me and missing out on what is actually beneficial for me. I would have been so much happier fitting a new floor instead of looking at the floor sitting with a group of people who want people like me fixed. It’s time for me to shine and I can only do that if I am being me to the full.

I’m not giving up (To This Day)

I’m not really feeling much like writing lately, but I haven’t forgotten about my blogs. I have a few ideas of what I want to write about but to be honest, every time I sit down at my pc to write I feel like I can’t be bothered. I am writing constantly for myself and sharing with my closest friends and family all that I am able to express. I haven’t gone into isolation, I just feel I am growing in a new direction.

Autism is not all that I am

Aspergers does not define me. I am me and not ready to give up being me. I have just gotten to a point where the online autism community is showing a side to it that I do not like. I miss the early days when I first started blogging. Blogging was fresh and people were loving, I love finding new bloggers who have that excitement about them, but I really struggle when I come across a blog that is so obviously putting down others. We are all on this complex journey, we all have a story to tell. Some of us are Autie/Aspie self advocates and some of us are advocating for someone we love who is on the spectrum. Then there are those (like myself) who do both. It’s hard to be in the middle of two camps and not know where to pitch my tent. If writing helps a person to not feel alone then why do some people feel a need to be so vile.

When I first started blogging there was less competing, bickering and nastiness. We were just about sharing and connecting, not being constantly right at the expense of another. I have watched wonderful writers come and go, friends I have made through writing that have now disappeared. Gone back to a safe place where they won’t keep getting hurt, the bullying is so subtle but it is there. What happened to, “If you can’t say something nice, don’t say anything at all.”

I’m reminding of school again

That’s right, this online world of my blog, the very place where I should feel I can be me. Somewhere I used to be able to express my life, my history and experiences as an adult with Aspergers. It has now become yet another playground of fear. But like I said, I’m not about to give up I’m going to keep praying and finding a way for me to keep sharing.

Love and hugs all. xxx

A lovely friend of mine shared this video on her facebook

I thought that this poem speaks louder than any words I can find.

I started to lose myself again

THIS IS ME

What have I learnt about myself?

I am more than loyal, I give my heart. I feel deeply and I hurt intensely. I give above and beyond what most people expect, what most people are used to. I give my all and I wear my heart on my sleeve. People can’t always cope with who I am, I think that who I am is probably challenging, but I don’t know how to be any other way. A lot of people avoid me. Maybe they like to stay hidden? I don’t know, I don’t pretend to understand. I just know it hurts.

I know that I once viewed life through a mask, never showing who I truly am, it was so very lonely. I kept a piece of me locked away because I could no longer trust, I had been hurt more than I could process so I stopped trying to.

Maybe this is why people run and avoid me, they trusted once and now fear the worst. Perhaps they can’t see that I am real, that who I am is open and honest. I love, I have love in me to share and only want to give love and feel loved. I trust in my God and in those that He has shown to me. I am blessed in the few close friendships I have. I don’t ever need to hide who I am from those who truly love me.

What have I learnt about others?

People will be who they can be, I don’t have to like the way they act, just love and accept them for who they are and where they are at. We are all on a journey. Some people are not nice, I have to accept this and keep myself safe. I don’t have to be their friend, they only ever do what is best for them. These people are the ones who will use me, they have ulterior motives and I can’t always see this until it’s too late. They become my friend for what I can do for them, what they can get off me, out of me. I’m starting to recognise the signs a lot quicker these days. I can be too nice for my own good at times.

Then there are people like me, there are not so many as what there seems to be selfish people, but they are out there. A lot of good people are in hiding, they hide because they too have been extremely hurt. I know because I have found some of them. When we connected it felt like we had already met, that we were destined to meet. Within these relationships I see a glimpse of what God calls friendship. A little piece of heaven in the smiles of compassionate and loving souls.

What do I need to do different?

I need to be MORE myself! I need to be me to the max! I need to not imitate or follow the crowd, crowds are not good for me anyway. I get lost in the crowd and no one ever sees or hears me. I do much better one to one. I need to accept I have a fear of loss and change, but it’s ok most people do it’s not just an aspie thing. Also remember that when these things come it makes room for new adventure.

But people move on and I don’t like change. I’m aspie, what aspie does truly like change? I will survive and I will look back and see just how much I grew through it. I can always set myself new goals, I can always dream new dreams. I will keep growing I have God on my side and He will always love me just the way I am. He will never leave me.

What do I need to practise?

I need to set myself clear boundaries and keep sticking to them.

I need to plan projects, things I am good at, and make them happen.

I need to have a routine that helps me, stop making excuses.

Don’t let other people control my time, time is precious.

I need to love me and see that I am worth loving.

 ******************************************************************

“Silhouette”

Lyrics by Owl City

I’m tired of waking up in tears
‘Cause I can’t put to bed these phobias and fears
I’m new to this grief I can’t explain
But I’m no stranger to the heartache and the pain

The fire I began is burning me alive
But I know better than to leave and let it die

I’m a silhouette asking every now and then
“Is it over yet? Will I ever feel again?”
I’m a silhouette chasing rainbows on my own
But the more I try to move on, the more I feel alone
So I watch the summer stars to lead me home

I’m sick of the past I can’t erase
A jumble of footprints and hasty steps I can’t retrace
The mountain of things I still regret
Is a vile reminder that I would rather just forget (no matter where I go)

The fire I began is burning me alive
But I know better than to leave and let it die

I’m a silhouette asking every now and then (now and then)
“Is it over yet? Will I ever smile again?”
I’m a silhouette chasing rainbows on my own
But the more I try to move on, the more I feel alone
So I watch the summer stars to lead me home

‘Cause I walk alone
No matter where I go
‘Cause I walk alone
No matter where I go
‘Cause I walk alone
No matter where I go

I’m a silhouette asking every now and then (now and then)
“Is it over yet? Will I ever love again?”
I’m a silhouette chasing rainbows on my own
But the more I try to move on, the more I feel alone
So I watch the summer stars to lead me home

I watch the summer stars to lead me home.

 

Who else is going to share?

http://www.facebook.com/HeartAndSoulMatters

Hello my lovely Bloggy friends,

Has anyone noticed that I’m not really blogging much these days? I want to, I really do, but every time I open up a fresh document to start typing I feel a bit lost. I don’t know why this has happened, it just has. I have been feeling like this for a few months, I have been finding inspiration in my old posts. I’ve reposted old posts and added a few new poems but nothing I feel I will look back on and say, “Oh yes that was a turning point for me!”

Writing helps me

I will keep pushing through knowing that this will soon pass. I have been having no problems at all with writing in my prayer journal and reflective journal. Also I have shared many deep thoughts and inspirations privately with my closest friends. Its just blogging I’m struggling with. I seem to have lost the effort.

I thought maybe it was because I felt hurt

I have been struggling to comment on blogs because of fear. I have been blogging three year this year and other bloggers have not always been kind. Some have taken me wrong; they don’t know me or see my heart. I stopped commenting a while back and only comment on my friends blogs where I feel safe. Where I know they will protect me if I get taken wrongly or if I get bullied or verbally attacked.

I thought maybe it was time to call it a day and make my blog private. I even thought at one point of deactivating my blog; thank goodness I didn’t as all 653 posts I have shared would now no longer exist.

My not knowing loop is a big black hole

A few days ago my lovely friend Fi, from Wonderfully Wired, wrote a post called The Spinning Question Mark. In this post was a beautiful conversation that she had with one of her little boys. Both of her sons are on the spectrum and reading about them helps me to remember. They are so very like me in their aspieness, especially *Harley!

In THIS post *Harley speaks to his Mum about seeing in pictures. To me this is my normal; it was only three years ago that I realised that my way of thinking is different. He talks about his spinning question mark when he doesn’t understand something.

Here is small piece from Fi’s post but please go and read it, it’s one not to miss.

So I thought I’d take it further.

“Harley, what do you see if I say the word ‘Volkswagen’? Do you see that same car again?”

“No”. He said. “I see an empty box with a big question mark over it spinning around and around because I don’t know what a Volkswagen is”.

Wow. I knew I was onto something so I dug deeper and asked him: “Do you see a spinning question mark a lot?”

He nodded. “Yes, every time someone says a word that I’ve never heard before. It is what I see when I don’t understand what the other person is talking about. I hate it when I see that question mark. I feel stupid and that’s why I sometimes get angry”

Comments I left for my lovely friend Fi

My spinning question mark is a hole, a black hole like in space. And yep, when people all talk fast or over each other the pictures make no sense. Talking with one person at a time is so much easier. When in a group of people I can’t really listen and will zone out, daydream on a tangent thought triggered by an image.

I just thought everyone thought like this. It makes so much sense now I know they don’t. No wonder other women can chat like they do. It really fuzzes my head being in a group of women all talking at the same time, way too many pictures bumping into one another…hehe

I cope by either being the quiet onlooker, the one that looks shy and listens. You know me better than anyone Fi; you know I am not shy or quiet. Or, I can cope by being the loud one that doesn’t listen at all, the one with loads of ideas who is a bit bossy. This depends on my confidence level and who the people are.

The pictures are so strong they can stop me from eating. I tried to explain this to Mr Locoman the other day. I cooked a soup and couldn’t enjoy it without my soup spoon. It just didn’t seem to taste at all. I told him that all I could think of is my soup spoon because I am at home and when I am at home eating soup I need to eat it with my soup spoon. I did try a different spoon but the size was wrong and all I kept seeing was my spoon with the pretty engraved roses on it. As a kid I would have refused to eat. As an adult I try to fix things, I try to fix me. So many of my past experiences can be explained by understanding myself and how I tick. Understanding why I am different and why people have treated me the way they have.

I have hope that things will change

I believe that it is when NT parents and adult aspies combine their journeys that we will bring true awareness of Autism. I only know my spectrummy ways but having a friend like Fi (who is NT) helps me to understand the way others think. Also me helping her to see it through my aspie eyes has helped her to understand her boys, she told me so and that has got to be helpful…right?

So, why do I keep sharing?

I share because:

• I have a head full of thoughts that might just help someone.

• I have a life time of history on the spectrum.

• I love all people even when they show very little love in return.

• I hate the thought of any child going through school unnoticed.

• I hate the thought of any child sitting thinking of space because of all the black holes in a day. Then being told they are stupid, ignorant, thick or a nuisance.

• I hurt inside knowing that there are kids whose parents want them fixed.

• I believe that maybe my life has a purpose and me sharing is a good thing.

• I know that through fighting my fears I grow and I want to grow and learn.

• I want people to understand that Autism doesn’t mean lacking empathy.

• I have traits that are unnoticeable but every day I struggle, writing it out helps me.

• In writing I have found connections, I no longer feel alone.

• I have a need to communicate; most people are not interested in what I have to say.

• I can’t always talk; sometimes I go for days without talking at all even though I want to. I share to release a build up of stored away expression.

• I need an outlet and writing is very freeing for me.

• Also…One day I won’t be around to tell my kids about this journey.

I share because it’s the right thing to do even when the fear of being me to the world keeps me awake at night. Even when I know there is a possibility of waking up and finding comments on my blog that are full of hate and manipulation. Even when I know that something I share might not be what someone close to me wants to read.

This is my journey and I will jolly well write about it.

I’m sick of hiding behind a mask, I’m sick of walking on egg shells. I will keep writing and I will probably get it wrong a few more times yet but I will not be sitting in a corner with my coat pulled over my head. That was me at school. I am not a child anymore, I have found my words and I will use my words. People need to know and little aspies can’t speak it out for themselves. I remember and I can write about it, it’s up to others if they want to read. Who else is going to help? Textbooks given to teachers and a few lectures is NOT enough in my opinion. I have lived it and my life is not worthless, it is worth sharing.

Who else is going to share?