Turning a Negative into a Positive

Two years ago, I set up this blog and Facebook page to turn our negative experience into a positive. To tell the story of our little family and what it is like to deal with Autism, an auto-immune condition and a rare genetic disorder.

The aim was to highlight our challenges, specifically autism in girls and to raise awareness so no one else had to go through what we have.

For those who don’t know, I was falsely accused of child abuse because some people within social care disbelieved my girls’ diagnoses and thought I was making it all up.  They misunderstood the challenges we face, the struggles we deal with.

In essence, I was accused of Munchausen Syndrome by Proxy in all but name.

It was a harrowing experience to be so fundamentally attacked all due to a lack of understanding of autism and particularly how autism presents in girls.  My character was assassinated, my life was scrutinised and I was ripped apart.  After the protracted and soul-destroying fight to clear my name, I resolved to do everything in my power to increase understanding of autism in girls.  My hope is that improved awareness may prevent the same happening to anyone else.

I still suffer from PTSD as a result of the false accusations and I am still healing.

We still have no support but we remain determined to be the best parents and advocates we can be for our girls.

So here we are two years on with nearly 13,000 followers.  What have we achieved in that time?

  • We’ve attended conferences and consultations.
  • We’ve filled out forms and reports.
  • We’ve written articles that have been published internationally.
  • We’ve been interviewed online and on the radio.
  • We’ve been a friend.
  • We’ve been a port in a storm, an ear to listen.
  • We’ve been company on lonely days.
  • We’ve been a reference tool and a sounding board.
  • We’ve been a safe place to vent.
  • We’ve had great discussions.
  • We’ve shared information from far and wide.
  • We’ve sign posted some to places they wouldn’t have known to look.
  • We’ve reassured and sometimes educated.
  • We’ve made people smile.
  • We’ve celebrated achievements (yours and ours).
  • We’ve commiserated challenges.
  • We’ve suggested solutions.
  • We’ve helped some achieve a diagnosis.
  • We’ve made a difference in people’s lives.
  • And we will continue because;  We hear you.  We see you.  We Get It.

There’s still so much more to do.  Change is still needed but it is possible, so we will continue.

So thank you for being here. Thank you so much for being part of the H2Au story.

You are our tribe.  You are our support.  You are helping us heal.

You are appreciated more than you know.

~MrsH

 

 

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Why does Autism Awareness matter to me?

“Until no more girls are missed, until no more families are tortured and blamed, we will tell our story.  Because it makes a difference.”

We’re coming up to April, Autism Awareness Month and it got me to thinking about why I blog.

Sometimes it is hard sitting here behind a computer screen.  Putting myself out there open to criticism, open to scrutiny.  I have no idea whether what I am posting is what you want to see, whether it helps, whether it helps you understand something you previously didn’t.  Sometimes I feel very vulnerable sharing information.  Sometimes responses can feel personal.  Sometimes Facebook limits my reach so it feels like my hard work is wasted.  Sometimes I wonder whether it is worth it.  The reason I do it though is because I want to be the person I needed when I faced the biggest battle of my life so far.  When I was most alone, when I had a mountain to climb and when I was scared.

As regular followers know my focus is girls (and women) on the spectrum because that is what I have the most experience in.  It is also what the world has least experience in, in terms of autism.

Autistic females are serially misdiagnosed, under diagnosed and undiagnosed.  They are misunderstood, dismissed, gas-lighted (or is gas-lit?) and belittled.  They are accused of hypochondria and hysteria.  So are their families.  Sounds like something out of 18th century doesn’t it?  Lack of understanding can sometimes lead to serious allegations.   The consequences of which can be devastating.

We need to raise awareness and understanding about the ‘female’ presentation of autism so that there is no more lack of understanding and so no one else goes through the torture that my family has.

We were victims of a serious lack of understanding which led to dire consequences for us.

You see a lack of knowledge here in Scotland resulted in me being (falsely) accused of child abuse.

Yup, even though my daughter had an autism diagnosis from England, when we moved here the ‘professionals’ didn’t see it, so their first thought was parent blame.  Not, ‘oh she must be diagnosed for a reason, let me try and understand’.

Instead the assumption was that I had a mental health condition and I was fabricating and exaggerating the challenges we faced.  The implication was I had Munchausens Syndrome by Proxy (MSP) or Fabricated or Induced Illness (FII).  For clarity, I do not.

Their patriarchal culture assumed I was wrong before even given a chance to prove myself.  Their ignorance led them to assume I was mentally unstable.

The arrogance to dismiss their colleagues’ diagnosis still befuddles me.  If I wasn’t so offended by the accusations I’d almost be ‘impressed’ at the level of cunning and manipulation they gave me credit for;  I mean in their eyes I’d duped scores of professionals to manufacture a diagnosis. I mean really?  When you think about it, its faintly ridiculous.  However living through such accusations is far from ridiculous.

Where was the compassion, curiosity and desire to understand?

Where was the assumption that the family should be treated as intelligent and capable?  Where was the respect?  Where was the acknowledgement that as the old saying goes ‘Mum knows best’?

It is no wonder that parents are too scared to listen to their intuition these days, as when they do they are so readily dismissed.

The ‘professionals’ weren’t open to anything new, instead their approach was to mount a covert witch hunt all whilst being nice to me.  It never occurred to them that I was right and they were wrong.  They were deceptive and cunning.  The embodiment of wolves in sheeps’ clothing.

Every detail of my life was scrutinised and pulled apart.  The intimate details of private conversations were falsely reported and illegally shared along with other personal information.  My most vulnerable moments were twisted and used against me.  I was misquoted and attacked behind my back by people who behaved as though they were on our side.

It was like a bomb going off when I read the accusations.  My heart was broken.  Shrapnel shattered my world.  All I have ever wanted to be was a mummy.  From the age of three, when asked “what will you be when you grow up?” my answer was always “a mum”.  And I am a good one.  No, actually I’m a bloody good one.  In fact, I am a great Mum.  (I have to keep telling myself this as part of my recovery therapy!)

I adore my girls with all my heart and I am so proud of who they are.  I am so proud of how hard they work, how kind they are and what great company they are.  The fact they are as beautiful on the outside as they are inside is just a bonus.

As a family we work as a team to overcome the struggles.  I’ve learnt anything that helps; from Makaton to massage, therapy exercises to teaching meditation, different parenting strategies to understanding different neurology from speaking to adult autists.  It’s fair to say that I have a good handle on the subject and I am an expert in my children.

My credibility as a parent has been undermined by the accusations and my ability to effectively advocate for my girls has been impeded.  But despite the added stress contributing to my own illnesses I am not quite broken.  Nearly, but not completely.

Garnering the last thread of mental and emotional strength, I fought.  I fought hard.  It was hard.  The fight nearly broke the last of me.  But I succeeded and cleared my name.

Sadly the impact remains.  We’re now a few years later and I still have PTSD (hence the therapy).  The way I am viewed by some is still tainted.  My trust in new professionals is impacted and I am on edge in every appointment.  Part of me is still broken, part of me is still defended, part of me is still scared, in fact I’m terrified.  I’m also outraged and I’m determined.

So that is why I do what I do.  That is why I try and highlight the issues we face as a family with girls on the spectrum.  And that is also why I remain anonymous;  To protect my girls.  It is also why it can be hard to sit here behind the screen wanting to help others.

Then you talk to me.  You make a comment that makes me realise I am reaching someone.  I have helped you, I have kept you company and made you feel less alone.  You tell me about your children, your family and your story.  I know then, I have made a difference in other little girls’ (childrens’) lives, in other mums’ (parents’) lives.  I have made a difference.

We’re in this together and you help me as much as I ever intended to help you.

So from the bottom of my heart – Thank you!

So this is why autism awareness matters to me.  It’s personal, it’s important.  It’s for my girls.  This is why I will keep raising the issues.

Until no more girls are missed, until no more families are tortured and blamed, we will tell our story.  Because it makes a difference.

The Importance of a Diagnosis

“The lack of a diagnosis, or label, gives rise to such confusion and uncertainty that the impact on mental health is well documented.  One could argue therefore that a label or diagnosis isn’t just a privilege but a necessity.”

I’ve been meaning to write a post about this since I started this blog.  I have so much to say that I let myself get distracted to the point of saying nothing.  I couldn’t decide how to frame it, contain it and get it all across.  Today I have decided just to start and let it spill onto the page.

There seems to be some confusion amongst some people we come into contact with during our journey.  Mainly professionals or workers on the periphery, to be honest, rather than anyone intensely associated with our journey, but there is this faction of people who think a diagnosis is a ‘label’. *add negative connotation and sarcastic tone of voice for dramatic effect!

These are some of my thoughts about this.

What is so wrong with labels?  We are all labelled and categorised throughout life.

Some examples that I am or have been labelled with are; First and most obviously my name but also; Mother, daughter, wife, sister, chef, writer, blogger, carer, painter, reader, foodie, friend, crohn’s patient, driver, shopper, customer, consumer, swimmer, ‘A’ grade student, winner, loser, runner up, interviewer, interviewee, applicant… you get my gist.

What these labels all have in common is they are descriptions of me.  Not necessarily me in my entirety but in the context of the use of the ‘label’ the relevant part of me in that moment.  None of them devalue any of the others. I remain all of me which ever description you use.

So when it comes to a diagnosis of Autism why do some people suddenly assume it’s a bad thing?

As Carly Jones so eloquently stated “A diagnosis is an absolute privilege…to have the correct label is amazing.  All these differences are not deficits”.

A diagnosis is a privilege – one regularly hears people reporting relief at finally having an answer to something after a period of ‘not knowing’, whether it is medical, mental, emotional or academic.  The certainty of a name, a definite – a label, is unquantifiable.

The lack of a diagnosis, or label, gives rise to such confusion and uncertainty that the impact on mental health is well documented.  One could argue therefore that a label or diagnosis isn’t just a privilege but a necessity.

The correct label empowers someone to accurately describe themselves.  It gives them a ‘club’ to belong to and answers the basic human need to ‘belong’.  It gives them [part of] their identity.  Self-Identity is critical to self-acceptance and mental well-being.

It also gives validation to their experiences.  Acknowledging what they have described and their account of their life.  It illustrates that they are seen, heard and believed.  It is validating and it is accepting of their true self.  It is empowering.

It provides useful shorthand to describe something to others.  It acts as an access key to supports and assistance.

It also prevents the opportunity for mislabelling.

Have you ever been wrongly labelled?  The injustice and extreme frustration of being falsely labelled can have devastating consequences.  Imagine being given the wrong medicine because of the wrong medical diagnosis.  Imagine being falsely accused of something you haven’t done or even falsely imprisoned.

I wonder if the people who think labels aren’t important have never been mislabelled?  Maybe you only feel the power of a label when you have been mislabelled or remain unlabelled.  In other words lacking the one you need, the one you deserve, the right one.

I will always fight for a diagnosis for my girls.  Whether they are diagnosed or not, they are who they are.  Their autism doesn’t disappear just because a doctor hasn’t called it that yet.  I believe getting a diagnosis is acknowledging their true identity and giving their experience a name.  In diagnosing, or as some would say, ‘labelling’ them, I am showing them how much I love them for who they are.  That is the key for their future, their self-acceptance and ultimately their self-worth.

A True Christmas Gift!

Kindness matters and so does perspective. Particularly at this time of year.

I don’t often get news from the day at school, but in the car on the way home today, Tiny Miss H proudly told me that she had a part in the nativity play.

A step up from last year when she was part of the crowd; ‘a villager’, so with excitement she announced proudly that she will be the Donkey.  We celebrated, laughing and happy for her, and thrilled that she was so proud.

Then she said something that made me cry.

“I was a King, but I swapped” she chirped merrily.

I know what you are thinking, most kids would be happy to be King so why did she swap?  Was it ‘taken’ from her for some reason?  Why?  How had this situation occurred?  Had she been duped into swapping by some other wily child?

After a short pause she continued;

“Freddie* was the Donkey and he was crying because he didn’t want to be, so I swapped”.

“Oh Darling that was such a kind thing to do.  I am incredibly proud of you….” I started but she interrupted, almost irritated at my apparent stupidity.  She queried;

“What?  Why wouldn’t I?  It’s what a King would do.”  As though it was the most natural thing on earth.

At that moment my tears started flowing.  I can’t tell you how proud that made me.

“Yes, yes, it is Darling.  It’s exactly what a king would do” I choked through my emotion, thinking ‘it’s certainly what a ‘King’ SHOULD do, but in this day and age, how many people do we actually know who would?”  (I’m very proud to know one!)

Her big sister, Little Miss H and I were explaining how you can be kind and generous without doing yourself a disservice.  We wanted to be sure that Tiny fully understood the generosity of her decision.  Little Miss H admitted she wouldn’t have given up the role.  Both the other Kings are Tiny’s friends and one of whom is her best friend, so to readily step away takes immense selflessness, or we worried, obliviousness.  Does she fully comprehend what she has done?  Does she realise that she can’t swap back?  It’s a one way move that I really don’t think many people would make.

Freddie will have the memories of standing proudly on the stage in a cape and crown, forever.  His parents will have their proud photos of their ‘King’ and will no doubt keep their momento programme with his name against the role ‘King’.  In that moment she built up a little boy whose heart was broken.

We explained how very kind it was, what a true Christmas gift she’d given to Freddie, because most people see ‘the Kings’ as really important roles and to give him hers is very precious.

“But so is the Donkey,” she almost shouted.  “Without the Donkey, Mary wouldn’t have gotten there and Jesus wouldn’t have been borned. So the Donkey is REALLY important!”

I asked why she thought Freddie might have been upset then at being the Donkey and she lightly stated that perhaps he was worried about being hot in the costume.

She’s thoroughly content in her decision.  She wanted Freddie to be happy and he is.  More  importantly to me though, so is she.  I will watch proudly as my Little Donkey with a big heart walks with Mary and Joseph.  And I will enjoy watching the three Kings deliver their Christmas gifts, privately knowing they aren’t nearly as precious as the one my daughter gave today.

Merry Christmas!

[*To protect his anonymity, Freddie is not his real name]

Is Understanding SPD the key to helping someone experiencing a meltdown/shutdown?

Please enjoy my article published in emagazine Crixeo for October which is Sensory Processing Disorder Awareness Month.

https://www.crixeo.com/sensory-processing-disorder-autism/

 

 

Girl on the outside

I sit here with tears streaming down my cheeks wondering whether you’ve noticed that the girls were mean to you today.

I suspect you have, as you’ve needed dark quiet since we got home, you were pale and withdrawn.  You went into shutdown.

I could see you desperately trying to be one of them.

I know you don’t know how to join in and I feel like I’ve failed you.

My heart breaks that you’ll never truly relax in social situations, it must be so exhausting for you.

I want to wrap you in my arms and make the world a kinder place.

 

I sit here with tears streaming down my cheeks, the mean girls excluding you ignites a flame of angry sadness within me.

I feel fiercely protective and want to rewind the week. I watch you try and I see their subtle rejection.  It’s sly, almost imperceptible and sophisticated beyond your years.

I pray you don’t notice and don’t feel that searing burn that rejection from a friend brings.  The betrayal, the apparent about turn.

But I see you notice something is off.  Your friend who you normally giggle with is cold shouldered and aloof.  She’s trying to impress an older girl and your sweet naivete isn’t cool enough.

Your confusion is encoded in your eyes and body; a language only I can read.

They are slightly taller and walk at a pace just faster than yours, their step in time, you a few feet away, trailing, rushing trying to keep up.

They whisper about secrets from their sleepover the night before, you know nothing about as you’ve only joined today.

They look to each other before deciding what to do next, your opinion irrelevant in their eyes.  They know you’ll fall in and do what they decide.

Their quiet confidence a stark contrast to your permanent internal questioning.  Their certainty that they belong, you the outsider, the visitor, the spare wheel.

I’m sorry my darling girl.  I feel I’ve failed you.  You don’t know how to join in, you don’t know how to be one of them.

We’ve tried to rehearse and practice but you avoid that sort of help from me just now.

I’m powerless to change the inevitable world you’ll face.

I’ve met them throughout my life too; the mean girls, the subtle exclusion that wields power over the one who doesn’t quite ‘get it’.

I wish I could make it easier, I wish I could make it fun.

Instead I say to you – “do ‘you’, be ‘you’ and be proud of who you are.”

Your intentions are pure, your heart is full and your soul is kind.

You are perfect and in the end you will find your tribe.

It won’t be easy and it won’t be quick but whilst you are waiting, be true to you.

Do what you love, be who you are and perfect the best version of you that you can.

It’s ok not to know what others can do naturally.  They don’t know what you can do excellently.

My promise to you is that I will never tire of trying to get people to be kind and compassionate.

I can’t promise to make people be different, as human nature is beyond my control, but if I can persuade people to behave differently then at least some good will have come from all of this.

In the meantime darling, I know you will continue to want to be friends with these people and I know they will confuse you.  I will try and enlighten that confusion but know I am always here to hug away your sadness or to give you quiet, dark space to decompress.

You are safe and I am the bubble around you that will keep you safe.

To the girls who were mean to my daughter I say;

Being a girl is hard and I know you are sweet inside.

I know you still play and giggle but I see you growing and changing.

You test the waters of growing up, dipping a toe into being a bit older

and playing older games that you make up as you go.

My daughter tried.  She can’t keep up, she’s wired differently.

Please be kind, please accept her as she is and please let her go gently when you inevitably move on.