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.”

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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.

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.

Why Funding Matters

As regular followers know Tiny Miss H suffers from hypermobility and hypotonia.  In real terms what this means is she isn’t as physically competent as her peers.

Technically, she has now incredibly reached her major milestones (after years of intense therapy) but she is neither confident nor consistent with her abilities and as a result mainstream activities are often not suitable for her.

We work hard on her physio exercises – we have equipment in the playroom and incorporate therapy into her play all the time.  We work hard, make it fun and get results but it doesn’t compare to being out and about taking part, socialising and having the variety of classes that most children access.  So we also have a blend of activities outside the home that we attend, to support her development as well as give her some fun.

She takes part in a mainstream ballet class and this works well.  At this age it’s fine because she is in a class with children younger than her who are at the same level.  As she grows older we will see whether the difference in her ability and stamina impact on her ability to keep up and attain the levels alongside her peers as they progress.

She also takes part in mainstream gymnastics – the exercises are adapted to suit her and she takes breaks in between to fully rest so she is not overdoing it.  Again there is a range of abilities and ages so at the moment she is not too conspicuous in her differences to the other children.  The classes are very taxing for her, loud, crowded, fast-paced and very hard for her.

However she is beginning to notice her differences and comment on them.  They are making her sad.  This obviously impacts on her self-esteem and confidence which is already very shaky.

The teachers worked so hard with her to achieve an assisted forward roll in class so she could get her first certificate.  She hasn’t been able to do a forward roll since so I think it’s a grey area!  The boost to her esteem of being awarded that certificate far outweighs the importance of whether she actually qualifies for it!  I think its lenience rather than cheating and I’m OK with that.  It works for entry level at age five.  But as she gets older and her peers progress at a rate unmatched by Tiny – what will happen to her self-esteem?  That’s why boosting it now is so important and I am so grateful to the teachers for their generosity.

Tiny has also been attending a motor co-ordination class which she was referred to by the physiotherapist. It is targeted for children with additional support needs and differing abilities.  She loves it.  She always goes in enthusiastically and works her hardest.  She’s relaxed and herself.  The activities vary each week and she can see her own progress.  It’s a smaller class than any mainstream classes and as a result Tiny gets the individual, personalised help she needs to complete each activity.  She also gets time to take things at her own pace.  And she is the same as all the other children who are importantly also her age.  She recognises their struggles in her own and she recognises their achievements as much as her own.  She’s with her tribe, she belongs. It’s a lovely atmosphere with kind, supportive staff who have been specially trained and who obviously care about all the children.

This is currently the only input we get from physiotherapy.  I manage her therapy at home and to be honest am not qualified to know how to progress each exercise or to adapt to target new areas safely.  To be quite frank I’m making it up as I go along.  I’ve learned loads from watching the professionals and implement it successfully at home but that is no substitute for the years of training and qualifications the experts have.  I’m not enough for my daughter to keep progressing.

Sadly until she falls behind significantly we won’t get outside help.  There just isn’t the funding.  She’s not ‘disabled enough’ I’ve been told.   I’ve shot myself in the foot, because I’ve done so much to help her she is now too able to get any help, yet she still needs help… we slip through the net.  We are in effect punished for our hard work and proactive early intervention.  The lack of external recognition for her hard work is disappointing. Her persistence at her therapy is to be applauded and she deserves recognition for her incredible achievements.  For me fire-fighting after we have hit rock bottom isn’t an option.  My whole philosophy of parenting is that of ‘early intervention is key’.  After she was diagnosed with ‘never likely being able to walk’, with the input and support we used to get we (I) taught her to walk – that didn’t come from nowhere.  Without the constant input she will fall behind and cease to thrive.  So there is no let up and I’m happy for that but I need support, I need help and I need guidance.

So I was desperately sad to find out today that the motor co-ordination programme is stopping due to lack of funding with immediate effect.  Tiny cried when she found out.  So did I.

It is not just about her physical development, it is about her emotional development and her mental health.  It’s about so much more than being able to stand on one leg with her eyes shut, it’s about being able to stand on her own two feet amongst her peers.  It’s about self-worth and it’s about giving these little people an equal chance at achieving their potential.

If you are in a decision making position with regard to funding of any sort please understand the full consequences of your tough decisions.  It really matters.