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Confusion….

I wrote but never shared this blog post months ago.  I didn’t publish it because I didn’t want to be laughed at. I am publishing now because this is what it is really like for me and others with high functioning ASD.  It is how I am feeling and seeing the world.  I am not asking anyone to feel sorry for me, far from it. I am simply reflecting on having tried and failed at being a social butterfly and I am actually o.k with the thought of retreating to the safety and comfort of my own little world.  This is a mask off account.

Right now I am feeling so confused by social relationships I am seriously thinking of giving up trying!

Does anyone else find relationships with others totally confusing?

Half the time I feel I am speaking the same language as everyone else the other half I may as well be talking in some foreign language.

The picture in my mind is of me scratching my head and looking lost.

I am really confused, totally and utterly in particular about friendships.

Now I see me hugging someone I think might be a friend.

The thing is friends stopped trying to hug me many years ago, I am sure my startled rabbit in the headlights look is to blame, I would really like my friends to hug me, it is not the actual hug that startles, it is the unexpectedness of their actions that sparks fear inside me. I am too unsure to initiate a hug with anyone outside my family.  It is the not knowing how they will react.  I tried this a few times recently and it didn’t go well, I tried to hug thoes I thought were friends on saying goodbye after spending time together. One friend, I like to think didn’t understand my intentions, just walked away, the other has been weird with me ever since!

I really don’t get it!  I watch others who are friends hug all the time!

Dictionary definition of friend: “a person who you know well and who you like a lot, but who is usually not a member of your family”

That definition doesn’t really help does it? I know lots of people well, who I really like and are not related to me but I know they don’t see me as a friend.  Even the ones I think are friends leave me baffled by their behaviour.

Are the people I communicate with through social media friends?

I am seriously thinking of quitting social media, one day someone talks to me via messenger the next they don’t or as I am often finding some only talk to me when they want something.  Once they get what they want they no longer want to talk to me.

In my head I am typing away on my iPad. Whilst looking bemused.

I like social media, well I thought I did, talking via text seems easier in many ways, plus you can talk to people anywhere in the world anytime of day or night. Share photos, stories, good times and bad.  The thing is I don’t tell people how I really feel, not very often anyway, they really would run a mile if I did.

I am now not sure social media is easier it is just as confusing in some ways more so because it is there in black and white, like, share comment or don’t, what does it all mean though?

I try to leave good comments because I know how much a small simple gesture can lift someone that is feeling low is it not social media etiquette to do the same in return?

For example a friend posts a photo, memory, quote or a tale of their day of something meaningful to them you respond by liking and leave a positive comment, don’t you?

Why don’t they do the same in return ?

 

In the real world the having friends and socialising is just as confusing…

The people in the playground that I talk too twice a day Monday to Friday?

The people I meet for a coffee?

Go on a day out with?

If someone is kind to you?

Thoes I am kind to?

Thoes I let in to my world and life?

Does anyone think of me as their friend in return?

I decided post diagnosis to try and increase my social circle, but without being somebody I am not, mask off, just being me, I like the idea of friends, having someone to share something with, it is lonely only having immediate family to talk to, lets face it there are somethings you can’t discuss with your mum, gran, husband and children.

It is all so very confusing and frustrating, I have a few people, I think might be friends, but one day we are meeting for a coffee or going for a walk, the next my messages are being ignored?

I am in this situation right now and I don’t have a clue where I have gone wrong. Nor do I know how to improve the situation.  I feel like retreating and putting the barriers back up.  I am just as lonely as before only now I am totally confused, hurt and bemused too.

Did I scare them off?

Where did I go wrong this time?

Maybe I bore them or confuse them with my randomness…..

I actually wish they would just tell me.  Maybe then I could learn.

I wish I had the courage to ask!

I never know what to say to someone which is funny because I am known for being very talkative. I live in a house with two other chatty people with ASD, they too seem to never know what to say.  The thing is when I talk at a thousand miles an hour, it is because I am so anxious and nervous and scared all in one go and the words just race away from me, usually I am not making much sense in these moments either.

The picture in my mind is words lined up on a running field waiting for the next race to begin.

Maybe that is where I went wrong?

Maybe I tried too hard?

As I mentioned previously the things I desperately want to say don’t ever want to come out, or come out totally wrong, the words just gather in my head, getting bigger and bigger until I have to put on the really loud music or walk for miles to calm my busy brain. Or they all flow out completely wrong.  Wrong order, sometimes the words are all jumbled up so don’t make sense even as words, just wrong.

I try so hard to ask reciprocal questions and to listen and follow other people’s answers, and I thought I was doing o.k but now not so, maybe they think I am not interested or not listening because I can’t sustain eye contact?  Or because I did or didn’t probe further?

It is really useless suddenly thinking of a question you would like to ask about something you have been talking with someone about several hours later due to it taking my brain that long to process all the information.  So I just don’t ask. Latterly I tried asking later when my head catches up, that didn’t help either.

You have no idea how hard this social stuff is!

I feel like I am living in a world where the majority of people know all the rules and I only know some of them! No matter how hard I observe others I still can’t learn the rules.

I always end up telling those I want to be friends with all my worst bits because I would rather they walk away now than build a relationship then have them realise they don’t like the real me, or they realise I am different.

The pictures in my mind show someone walking away and a building collapsing.

They never share things with me or come to me in times of need.  I can be calm in a crisis.  I would love to help someone else out.  I frequently make gestures such as random acts of kindness but I fear they overwhelm the recipient, and that scares them away too!

In my mind I see a recipient of a box of chocolates looking bemused at the gesture.

I have come so close to accctualy saying to someone “are you my friend?” But oh how desperate would that look?

I actually wouldn’t mind if someone said no because then at least I would know where I stand!

Life would be so much simpler if I could just be happy being lonely……

 

I am starting to believe I was happier in my own small world.

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Walking in her shoes…..

It has been said many times over the years that my middle child and I are so alike it is scary.  We look alike, have the same mannerisms, we even sound alike!

Someone close long ago once said to me “there could never be another like me” along with “they broke the mould when they made you”.

They got it wrong.

For she is so very much like me.  There is a part of me that wished she wasn’t.

In theory that should make it easy to be the parent she requires, to give her the nurturing and support she needs.

The reality is over these last few weeks I feel I am living in a parallel universe where I am back starting my own journey through high school.

It is not going well, I know how she feels, I know how she thinks, she is walking in my shoes and I am walking in hers, yet somehow she is just out of reach.

Yesterday she told me everything feels wrong.  I remember exactly how that feels.

School days are like a helter-skelter, rollercoaster ride of emotions for us both, both of us are anxious, stressed and exhausted, she feels this way because it is all so new and overwhelming, I am feeling this way because I know how much she is struggling and I am worried how much more she can take.

School, life  and ASD totally broke me once.  I forever have to live with the scars that prove it.

The trait I learned to control and hide eventually at school is so highly visible within her right now, she shouts, swears and offends teachers and pupils every time it all gets too much, she is isolated and alone, vulnerable and miss understood.

I keep racking my brain trying to remember all the tricks that got me through the days, then I remembered how awful my own early high school days were, I was flung out of classes, I was easily led into trouble, I didn’t fit in either.

It was Christmas of my final and fourth school year before I settled down.  Before I worked out I needed a desk in the corridor, gum to chew and music to listen to, to cope, I was given everything I asked for because at least I had stopped shouting and throwing school furniture!

I still have that final school report where two different teachers referred to me an an “enigma”.

I now fully understand the frustration and confusion they must have felt!

Being a teenager on the spectrum is so hard, so confusing, so overwhelming and challenging.

My daughter is doing as I did, questioning why she can’t behave like everyone else, why she can’t follow group conversations, why can’t she communicate what she really thinks and feels, why she doesn’t share the usual teenage girl interests, why it feels like she is living in a world she has no rightful place in?

I keep trying to build her up, “it’s o.k to be different”.  “You are perfect to me”.  “If you believe it you can do it”.  She doesn’t want to hear it. She wants to be like everyone else.

We are embarking on what must be the hardest life lesson to learn as a teenager with high functioning ASD, no matter how hard you try to be neurotypical it can never be.

How do I know?

Right now she is walking in the very same shoes I walked in many years ago…

 

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Please don’t tell me everyone is a little bit autistic….

B4986163-FE07-42B0-96C2-581D9A761176I hear this phrase frequently “Everyone is a little bit autistic”.  Usually it comes up when I try to explain the challenges two of my children come up against because their ASD is like mine and on the surface not obvious and also when I have told others of my own very recent diagnosis.

Maybe people say it in an attempt to emphasise.

Maybe people say it in an attempt to belittle our struggles against an invisible force.

This particular statement often from well meaning individuals frustrates and offends me because in reality, no everyone is not a little bit autistic.  Being autistic is not a lifestyle choice, it can come with gifts but for nearly every single person who is truly autistic it means living with and battling daily obstacles that usually put us at a definite disadvantage to those considered neurotypical.  To have a diagnosis of autism someone has to experience difficulty in numerous areas of their lives, there is no little bit about it.

In my experience thoes considered high functioning ASD like myself; I hate the term but use to demonstrate a thought,  where ASD it truly a hidden disability suffer far more than most people realise because they know they are different because you can’t see their disability, because they long to belong and share in what is a predominantly neurotypical world, yet these are the individuals that the ignorant refer to as a little bit autistic. For someone considered low functioning like my youngest child who’s ASD is visible and to the ignorant they are considered severely autistic they appear to be spared thoes feelings and struggles of being different and not belonging.

For me my challenges include an inability to follow a conversation within a group, I assume due to my information processing delay and differences, my brain is wired differently, no matter how hard I try after 36 years I still get lost in seconds in a group situation.  I end up saying something in response to several comments earlier that makes me look silly or hours later I suddenly want to make a comment and contribute but the moment is passed, people assume I am not interested in what they have to say, but I am, it just takes me that long to get my head around everything, have you any idea how frustrating that is?  It also makes me feel left out and alone even though I was there physically!

I have an uncanny ability to sit in a meeting listening carefully to what everyone says, even taking notes but at the end of the meeting I will have come to a completely different conclusion to everyone else, ask me to explain my rationale and then others can see how I got there, usually because I instinctively take everything literally but this causes lots of problems because I end up confused, I will read the minutes and struggle to believe I missed all the information I did, I also often realise on reflection I am taken out of context.  I speak the same language as everyone else in the meeting but somehow I am as lost in translation to them as they are to me.

I take in little pieces of information and build them into bigger pictures, meaning the end picture is not always clear until I have the majority of detailed pieces and then assembled in the right order in my mind.  I have learned to play back a days events in my head and usually on reflection I can build the same picture as everyone else did, but someone who is  neurotypical has the ability to start with the bigger end picture, then they focus on the details, meaning they don’t have to work anywhere near as hard to make sense of something new.  This goes not just for information, it applies to experiences too.  Meaning I often feel totally exhausted, irritated and overwhelmed at the end of a day full of new things.  Yet somehow I need to wear a smile and pretend it was all great.

I take my camera almost everywhere I have a thing for taking pictures, I also think in pictures and remember in pictures, any event in my life the good the bad and the awful I can recall in pictures down to every minute detail from a ridiculously young age. I see it as both ASD’s biggest gift to me but also biggest curse.  It is lovely to instantly remember my children as babies to see their faces, to smell that unique scent, to hear the cute baby noises, to be able to see and hear the voices of someone I loved who is no longer here.  I can bring it all to mind in an instant vivid as if real. There are some pictures my brain stores I would give anything to forget, because they cause pain, shame, anxiety and sadness.

I am certain my youngest child has the same ability, the ability to play back images in their mind like a cinema, I catch them laughing away at nothing there, or occasionally they just come over all sad and teary.  A professional told me it was involuntary and related to their disabilities. What would they know?  My child will often say what was so funny or sad and usually it is something that happened before. I put a huge amount of effort into trying to give this child the happiest of memories and to shelter them from any pain or hurt because I dread them being trapped with painful memories.

Photography it is not an obsession as it may seem to some, it is my biggest tool and a hidden coping strategy.  It acts as a tool because later I can look over my pictures, they help me process my days, because although I store pictures of everything in my mind there is a bit of a lag between what has just happened, if I have had a busy full on day at the end of it I find myself feeling lost, pictures help me make sense of the immediate past. Being able to take pictures can really help me process information because it lets me capture the fine details.

I live with a sensory system that interprets things differently to the majority of people, I am always too hot.  I sweat buckets. I hate it.

I long to have nice hair but can’t bear for anyone to touch it. It hurts, it feels wrong, it takes weeks for it to feel like mine again. It takes me months to find the courage to brave the hairdressers.  It has been over a year since the last trip for a trim.  I have been trying for weeks to get the voice in my head to convince me I can do it.

I like particular clothing, I haven’t worn anything other than jeans for the best part of twenty years! When I find a top I really like I will buy another three the same I wear them until they fall apart because they feel right.  I long to wear smarter, prettier clothes but again they feel wrong, they make my skin crawl. They send my anxiety skyrocketing, so I go around looking scruffy.  I am hugely thankful that some take the time to be a friend despite my appearance.  I avoid parties, I own one going out top, I can stand to wear for a few hours with my jeans, if the occasion was to call for more formal clothing I just wouldn’t go.  I will hopefully graduate in a few years time and what an earth I am going to wear already weighs heavy on my mind.  The thought of just getting my certificate posted out appeals hugely but I want to inspire my children so want to set them an example to aspire to.

I struggle with the texture of foods, I like very plain food. Some textures and smells have seen me throw up. In particular I struggle severely with fruit and vegetables. I get really stressed if I order food without garnish and it comes with, those tiny bits of greenery will taint the tast of all my food just by being on the same plate.  As a mother I mask my food issues as best I can in front of my children, though they all have their own sensory food battles.  One of my children at the age of eight has such severe sensory issues around their mouth they are yet to conquer eating solid food, progress is so slow, yet I fully understand that childs torture and torment.  I would love to go out for a meal and order straight off the menu without having to ask for accommodations.  I dread getting asked to a friends to eat, I don’t want to appear rude but I really will go into full scale panic if my worse scenario happens and I am presented with something I can’t eat.

I have to have something in my mouth every waking minute of the day, I use gum as it is socially acceptable and easily hidden by pushing to the roof of my mouth, before gum I bit my nails, chewed my clothes, fingers, pencils, two of my children have the same issue, chewing is calming, it also helps with information processing somehow.  I get really annoyed when my youngest child’s school take their chewy away because they think it stops them talking, they don’t understand that my child is unlikely to talk if all they can think about is the need for sensory input!

I have huge issues with sleep.  Insomnia is my own and my children’s biggest nemesis.  I frequently feel exhausted but just can’t sleep.  I find it impossible to shut down. I struggle to get up in the morning. My body clock for years now wants to sleep from 4.00am -12.00pm! Absolutely impractical as a parent and a student! All my kids struggle with sleep all take melatonin with a varying degree of success. It means they start their day exhausted too, it puts us at a disadvantage in education and life no one learns well when tired, no one can be their best when not firing on all cylinders.

To most I appear normal, perhaps a little eccentric, most unless told don’t know I have ASD that is because over the years I have learned strategies to juggle the differences ASD has given me, I am constantly adjusting and adapting to try and make things easier for myself and my children.

When someone says “Everyone is a little bit autistic” please stop and think how hard those with ASD have to work beneath the surface.

Ask which part of autism they would like?  For any perceived gifts there are tenfold pitfalls.

Thoes with autism didn’t choose this fate, I am yet to meet anyone with ASD who is not doing their best or trying their hardest. Remember that and don’t mock, don’t belittle our struggles.

 

 

 

Five years of believing….

Five years ago this very day my youngest child was officially diagnosed as having ASD at the age of 3 years and one month.  This child was the first member of my family to receive a diagnosis of ASD but he wasn’t the last.

I remember clearly that day feeling a huge sense of relief and an engulfing overwhelming sense of sadness and loss.

I was relieved because we finally had a name, an explanation for the what seemed torturous condition that at that point had a deep grasping overarching control of my beautiful baby and his development.

Sad because ASD is forever and at that point I believed it to be the single worst curse a child and family could ever be afflicted with.  I felt like a light had gone out inside myself.

Loss because of all the things I believed we had been robbed of, all the things my child could and would never be.

Five years ago today is also the day the “penny dropped” completely for me, the day I knew for the first time without any doubt in my own heart and soul I too had ASD.  It was the day I finally admitted to myself something that had niggled away in the back of my mind from the first time I learned of Aspergers and felt it described myself to a T.

It is one thing admitting something to yourself,  though it would take me four further years and for another of my children to receive an ASD diagnosis for me to find the courage to have the conversation with those closest to me and my doctor and later psychologist.  It then took me a further four months after receiving my own diagnosis of ASD to come out the closet initially to friends and lastly very recently my middle and only child without an ASD diagnosis.

I found it strange that I instinctively knew how to help my youngest child after that initial first assessment nine months previous to that official diagnosis day.  It was more than a mother’s instinct, I began to question how I knew, how I understood what my child needed with very little guidance at that point from professionals.  I also found it strange that I was so sure that the awful heartbreaking prognosis my child was given that day was wrong.  I wasn’t in denial, I one hundred and one percent accept my child has ASD, what I knew that day in my heart and soul is my child would exceed and defy all of those professionals expectations.

How did I know, because as another adult with ASD put it recently “If you want to understand a child with autism, ask an adult with autism.” (Bonnello 2018).

We are cut from the same cloth. My child and I.  In those months between initial and final assessment this was the conclusion I was coming too. All of my children and myself are exactly like my youngest child in presentation just to lesser degrees. My eldest child is most like my youngest and my middle child is most like myself and we sit above the other two in someways we demonstrate the spectrum element to ASD perfectly.

Five years ago today signaled a turning point for myself, my youngest child and possibly my whole family.

I sat listening to the professionals summing up the findings of their months of assessments, being told my child was unlikely to ever develop functional speech, being told my child would live in their own little world where it was unlikely many if any would be able to reach them there.  Being told my child would require significant life long support and that they would never gain independence.

I listend, I cried.

Not as much as I did after the initial assessment months earlier, that one saw me fall apart for a little while.  I am ashamed to say I very nearly walked out.

I don’t do running away though, so stay I did.

The feeling in my heart that day was they were wrong, even if the voice in my head was trying to convince my heart to accept what was being said.  I just knew they were wrong.  There was a beautiful child just waiting to find their way locked inside my child I just knew it.

How can professionals write a child off at such a young age?

And wrong they were, my child is still significantly delayed in their development at now eight years old my child is very much like a child of ages two or three in most areas of their development our biggest challenges continue to be the lack of danger awareness and the battle to get my child to eat solid food.

Where my child has proven professionals wrong is they have developed functional speech, they are toilet trained, they can manage some life skills for themselves,  they show a deep empathy and affection for others, they have imagination, they seek social interactions, they seek to share interests and enjoyment, they are learning to read and can type to express themselves in a written format or to explore the web.

My child is not isolated and lost in their own wee world, my child lives in our world and is very much a part of it.  Just as we are all part of my child’s world. My child is loved by everyone that knows them just as my child shows them affection in return.

My child’s eyes, smile and laugh,  light not just my life but the lives of all that know them. It is impossible to be in my child’s presence and not be smiling with him, or sharing a laugh.

My youngest child is my biggest inspiration, if achievement was measured by how far one individual has progressed against all the odds stacked against them, in five years they have achieved more than was ever believed possible for them to achieve in their lifetime.

I am not unrealistic my child still requires significant support at all times and this may well continue throughout their life, but my child who was written off five years ago today, makes a valid valuable contribution to the lives of everyone they touch, they are a happy child, so far removed from the hollow shadow they were on that assessment day.

I no longer see ASD as the curse I onced believed it to be. ASD is a different way of interpreting the world and expressing oneself, I believe in neurodiversity and there being a place and purpose for everyone. Those who are neurodiverse (ASD) walk a different path to those who are considered neurotypical (normal) it doesn’t mean their lives are of any less value.

It has been a long hard journey, with many battles fought and won and many more still to follow. We wouldn’t have got out the strating gate though if it weren’t for my belief and determination that my child would defy all initial expectations.  As well as my following my instincts in how progress could be achieved.

My child inspired me to question my own abilities, my child has taught me to believe in myself.

How?

Well if that child can achieve against all the barriers life has put in their path because I believed in them and through both mine and their own determination then what is my excuse for not trying to see what I could achieve when I started to believe in myself?

I have always had determination.

So try and learn to believe in myself I began to do.

I went back to education, education wrote me off a long time ago, now I was going to have to somehow learn to believe in myself and my ability to succeed.

Why ?

It was clear by the point of that final assessment at least two of my children had needs that were not typical, I needed to understand how to help them, I needed education to allow me to be their biggest teacher, advocate and supporter.  It would become apparent in time all three children were going to require me to be more than just their mother.

I started off with one unit from The Open University on understanding the autism spectrum, it seemed like the perfect place to start, autism had come to stay, understanding it or trying to was a logical first step. I did it, I passed.

I took a few other small units through our local college in child development and understanding and supporting children’s behaviour, in our home we experience every type of challenging behaviour imaginable again it seemed logical to learn more, I passed those too.

I signed up to a certificate in higher education in education studies, over two years, one unit was about supporting education, something all my children required the other an introduction to childhood studies and child psychology, again a logical step, I passed that too.

I signed up to learn to drive, my academic conquests gave me the confidence to try, after quite a few failed driving tests and eighteen months later, I finally passed my driving test just over a year ago now, something I had for many years believed I would never do, because I have little coordination and find driving frightening, even now a little bit still.

I started to really believe I could study at higher education level, this year with help and support from a few friends I completed a diploma in child and youth studies.

It seems appropriate that today I accepted a place to study for a degree in child and youth studies.  I will require support and for others to believe I can do this, just as my child requires support and for others to believe in them.

I believe I can do this though and when I feel like giving up I will stop and look at my child and my child’s siblings and how far they have come against all the odds in the last five years and I will keep on trying and believing just as they do.

Who knows where we will all be in another five years time?

 

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My Fear For My Child….

It’s hard watching someone you care about deeply, heading in the same direction as you did, full speed to make the same mistakes. To suffer in a similar way. To feel at a loss and powerless to help them.

One of my children will leave their first school in a few days time and instead of enjoying this time of new adventure and celebration, anxiety and the need for control is making this a horrendous experience for us all.

At the moment this child is hell bent on driving all their friends away and alienating all those, adults included that don’t understand my child’s bizarre behaviour.

I am finding it hard to watch because I did the very same thing many, many, moons ago. See if I ended a friendship, it was easier and hurt less than if the friend did, plus I had the control I desperately needed and craved.  There was also an element of testing, if I could be really mean and horrible to someone and they didn’t run away then that gave me security in that relationship.

I have tried to reassure my child, tried desperately to offer advice, something stronger than me appears to have control.

My child is off to a school ten times the size of their current one.  I think their behaviour is a bit of both, driving people away because that is better than being abandoned when current friends make new friends and move on naturally and testing who will still be my child’s  friend after all this turbulence, in this new environment.

It seems to me that some of the females, those on the spectrum at the high functioning end only really learn social skills and social lessons  from our mistakes and we seem to have to make many epic huge ones to learn such small lessons.  At my middle childs age I could be told something a thousand times and still not understand, or I would defy the rules.  I am fairly sure my own ASD profile has an element of pathological demand avoidance, PDA that has thankfully mellowed over the years. Maybe it changed when I learned to tell myself “I can…” even when my brain was screaming “I can’t” at me.  Or maybe it changed when I learned to trick myself into believing I am in control?

I was in my twenties before I learned it was o.k not to have control at all times. Life got a lot easier when I learned to let go. Although even now occasionally the control monster will come out and it will take a few days for me to realise I am once again in full must have control mode. It happened to me just recently when someone forced a change on me I wasn’t ready for, leading to a full scale meltdown, that on reflection was hugely embarrassing, seriously I totally overreacted, something that rarely happens with me since I learned the “if you can’t change it or have no control, let it go” lesson.

My child doesn’t understand their vulnerability they seem to lack inhibition, caused by their undiagnosed ASD.  Just as I did and because they also can’t easily predict the motives of others and this terrifies me.   I ended up in so many dangerous situations because of this, where I was taken advantage of and I don’t want this to be the same for my child.  I was left with severe post traumatic stress disorder as a result of some of the goings on in my teenage years, something that has taken me years to move on from.

I don’t want this fate for my child.

At the moment this child still thinks in black and white and has yet to gain grey thinking skills. My oldest child is just beginning to at long last demonstrate awareness of the need to not see the world in black and white, they are four years older than the middle child I am referring to in this post.  Based on this we have four more years of black and white thinking with an explosive temper and self destructive attitude with the child in the middle.  I was sixteen when I realised I had to change my behaviour to stop ending up in dangerous situations, where I was vulnerable and at risk. That fits perfectly with my theory.

As an adult who seemed to develop understanding and some social skills much later than my peers I look back on my teenage years with a great deal of sadness.  I was struggling with my identity hugely, I knew I was different, but not why, I thought it was my background, my experiences, it took twenty more years to find the real underlying answer. That answer being ASD.

I did so many stupid things because I couldn’t foresee the consequences, because I lacked inhibition, I could walk into a bar at 14 and order a drink, I was never refused or asked for ID, why ? because the rules said I couldn’t!  No one questioned it I guess because although I am not a confident person I can act like one.  I stopped drinking the day it became legal for me, there is one huge massive marker if ever there was one on the ASD/ PDA front!

Or perhaps I made epic mistakes because someone who sensed my vulnerability gave me attention when I was severely struggling to maintain friendships, making me easily lead into the path of danger.  I didn’t share interests with my peers, that and a serious lack of social skills although I was always seemingly very confident.

I always had much older friends, that put me in danger because I couldn’t easily predict their motives. It is a very strange conundrum having ASD but being highly sociable and desperately seeking social contact all three of my children are the same even the little one who has severe ASD with developmental delay is a highly sociable character.  I know  it was in an attempt to prove to the world I was the same as everyone else that I took huge harmful risks.

I needed saving from myself!

In the end I learned to save myself by becoming quite reclusive for a long time, I withdrew from the world in many ways for many years, only allowing those that survived the “push away” test to remain in my world and slowly over the last ten years I have been finding my way back.

Now I am watching on as my child looks set to follow a similar developmental trajectory wishing I could somehow make them understand the lessons they need to learn without all the danger and pain I experienced, wishing I could save them from themselves as I wish someone had done for me.

I see the beginnings of the same behaviours I exhibited starting to show in my middle child.

It really scares me.

 

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Achievements…..

I want to talk about something that annoys the hell out of me.

Tonight it was my oldest child’s school show. That child gave their heart and soul to that production of a well known musical. Although they usually only attend school an hour or so a week, they were there from first thing until late night everyday this week and on Sunday’s leading up to this week.   My child wasn’t on the stage, that would be too overwhelming for them as my child is high functioning ASD, they headed up the lighting crew with a team of quirky volunteers, something this child has a real talent and passion for.  At the end of the show, acknowledgement and thanks was given to the cast, the producer, the band and conductor, the sound man yet not one mention was given to the technical team who worked every bit as hard as all the other people involved.  Then the music played again and people started to leave.  My heart sank for the children standing with my child at the light and sound equipment and controls their contribution went un recognised. I appreciate it was likely an oversight and they were likely not deliberately left out.  These actions have consequences though.  The show wouldn’t have been the spectacular event it was without their contribution.

My heart broke for those kids and my child. As everyone was leaving you could see the disappointment on their faces.

 

Why is it so hard to recognise achievement when it happens in a less obvious way?

I have watched my child grow into a beautiful young person who gives so much through volunteering to our community,  school hasn’t worked for them because most made no effort to understand my child and those who did understand were powerless to help them achieve in the way that is expected and recognised of our young people.

 

Despite this my child has learned to achieve in their own unique way.

Why though is it so hard to acknowledge those achievements?

Why are “thank you” and “well done” so hard for some to say?

 

I wish all the achievements of individuals were recognised and not just those of the high flyers that occur in the conventional manner.

When someone takes the time to acknowledge an individuals achievements you boost their self esteem, you build confidence, you make that person and their contribution no matter how small feel valued.

You make that person want to contribute more.

You make that person try harder.

You make that person believe in themselves.

In my experience for many on the Spectrum the majority of achievements even the small everyday ones are often much harder to gain, because they have to juggle sensory issues, learning from the inside out, processing delays, focusing difficulties, difficulties with interpretation, the need for repetition, the difficulties of overcoming rigidly all impact on ones ability to learn and achieve.

I know this is how it can be through personal experience as l am currently a University Student myself.  I struggle to concentrate, I struggle to understand, I burn out.

I wholeheartedly appreciate every “Well done” every “You can do it” every “I am proud of you.” They help me keep going they stop me giving up.

My child has been a pupil at their school for four years and not once has their unique achievements been recognised.

The message you give to someone on the Spectrum and infact anyone who tried really hard to contribute when their achievements go unrecognised is it wasn’t worth the effort, you leave them asking “why did I put myself through that?”

You leave them feeling they are not good enough.

My youngest child is classed as having low functioning ASD they are unlikely to achieve the expected achievements of their peer group such as sitting exams, going to university, having a job even living independently.  That doesn’t mean they don’t make progress although slow and small. That doesn’t mean their contribution is of no value.

In our house we celebrate everyone’s achievements no matter how small or large. We encourage pride and self belief. We value every little step. Everyone needs those other than the people we live with to recognise our efforts and achievements too.

Just stop and think what an amazing society we would live in if everyone’s efforts and achievements were recognised and valued .

Everyone would feel included.

We can build a society like that and it all begins with two words that take two seconds to say …..

“Well done.”

Try it, next time you see someone achieve something that is an achievement for them, even if to you it is something small and insignificant.

I promise you will watch them grow.

 

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Why I write…

I have been asked by many why I write?

Especially when to most who read my work I am anonymous.

I write because it helps me process things.

Often writing helps me see the bigger picture, it helps me look at a situation from different perspectives. Writing helps me make sense of what is often a very confusing world.

I write because I quite literally see words in my head as if they were print on a PC monitor that grows bigger and bigger until I let the words out.

I write with the hope  that by sharing my experiences and insight I might make the world seem a little less lonely for others struggling to come to terms with a diagnosis of ASD particularly for those who like me made it to thirty or beyond before learning who they really are.

I write with the hope of removing some of the shame and negativity that surrounds the stereotypical view society presents of those with autism.

I write because I can write about the things I want people to know about but would struggle to say verbally.  The things that when I try to talk, make all my words come out wrong or the things that I have an irrational fear that if I were to actually talk about them the world would end.  I am still working on solving that one!

By writing I can open up a conversation I would otherwise be at a loss how to begin.

To have a diagnosis of ASD you have to have some significant difficulties with communication and social interactions, those difficulties are overcome for me when I write.

When I write I don’t have to worry about eye contact, I don’t have to remember to ask corresponding questions, I don’t have to sit on my hands, I don’t have to wear my mask.  I can be the real me.  I can speak with my true voice.

I have found it so frustrating too,  having people telling me how it feels or how it feels for my children  to be on the spectrum when they themselves don’t have ASD.  That is not to say there are not amazing people out there who are not on the spectrum that do understand.  It is just I strongly believe if you truly want to know how it feels to be a child or adult with autism then the most accurate description is going to come from another who has already walked in a child or adult with autism’s shoes.

A prime example is I screw up at job interviews quite spectacularly actually  because when stressed I take questions very literally and answer them all wrongly as a result.  You can’t understand my frustration at this unless you have been there, I also have some processing difficulties which mean it occurs to me usually about twelve hours later just how much I screwed up. So for twelve hours I am under the illusion I have a chance. Then my world crashes down around me.

Yet most who know me would be surprised to learn this is an issue for me because on the face of it I have excellent communication skills!!!

As with most things in my life I have gone about things back to front, my youngest child was the first in my family to be diagnosed as having ASD, I received my own diagnosis four and a half years later. Another of my children received their diagnosis somewhere in between myself and my youngest.

Instinctively thought I have always felt best placed to understand my children on a higher level other than just being their mother, I connect easily with other children with ASD outwith my family and without really trying.  In some ways it is almost like we (others wit ASD) have a unique ability to understand each other, often without a need for words.  I frequently find the answers to problems that actually work for myself and children as opposed to the well meant strategies pushed at us by well meaning professionals who think they understand our world.

That is why I share what I write because if I can get just one person to really see and understand the world from the point of view of someone on the spectrum then I will have made a difference.  I wrote a piece a few weeks ago, about an analogy that compares a day at school for a child with autism to a can of coke that gets shaken throughout the day and then explodes on opening.

A day in the life of a child with ASD using the coke can explanation…..

Teachers and professionals have read that post, I have received so much positive feedback from those that read it because before some parents, teachers and  professionals didn’t understand because no one had explained it from the perspective of someone who was a child with ASD instead the information they had was often assumed.   I opened lines of communication providing an opportunity to really explore the difficulties a child faces.  In response I wrote a piece about how simple changes could make a child with autism’s life at school easier.

How I would make Sam’s day a better day, following on from the coke can explanation…..

If the world is to become truly autism friendly then the first step is to understand, followed by acceptance.

That is why I write, in the hope of contributing to a world where autism is understood and accepted.  Where those belonging to a different neurotribe are celebrated for their differences instead of feared.

 

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