Five Years Ago we met Melatonin…

Facebook reminded me today, on my time hop thingy, that it was 5 years ago that we first tried melatonin.

Little Miss H was 5 years and 8 months old and hadn’t slept through the night.

We had tried everything.  As a baby she had allergies and reflux, so she fed regularly and we were up through the night.  By regularly I mean almost constantly and she would only settle on being held.  She was a very sucky baby and we determined that a lot of it was sucking for comfort/to be soothed (rather than hunger) so we managed to settle her on and off with the use of a dummy, one particular dummy only – with hindsight her particular-ness (is that a word?) about it was a clue to her autism but of course we had no idea at the time.

The minute the dummy fell out she would need it back and if it rolled out of her cot the whole neighbourhood heard about it!  She went through a phase as a very young baby of sleeping OK during the night (and still waking early) but that lasted mere weeks if that.  I really thought we had cracked it, but it didn’t stay.

She’d fall asleep in a room full of people during the day – we didn’t realise at the time but it was clearly social exhaustion, but she still wouldn’t sleep at night.

As she got older she fought like billy-o at nap times and bedtime.

We had a great bedtime routine from early on and a consistent bed time.

We were doing it ‘right’ according to the books but she still wouldn’t settle or sleep.

So we played detective – we started trying things to see what helped.

We added music, she liked it… so it became part of our routine but it didn’t fix the sleep.  We added lavender to her bath, that didn’t work.  We added a light…we took it away again!  We tried swaddling – she hated it.  We tried sleeping bags, we tried sheets, we tried everything we could think of.

We moved her out of her cot incase that was the problem.  As she entered the twos and threes things just went from bad to worse.

Bedtime became such a battle.

People said make sure she’s tired….  She was going to the park/play dates/outings, playing with me, being entertained by me, then play group and later nursery and not having a nap, but none of it made a difference.  I was a big supporter of ‘sleep promotes sleep’ so I really persevered with the day time nap but I ultimately realised I was losing the battles and the war!  It felt like I spent the whole time battling her so we gave up nap time.  She became an overtired emotional wreck by the end of the day but it was easier than the bedroom battles.  It was an exhausting conundrum for us all.

People said make sure she’s eaten enough and then she’ll sleep through.  She did have a very limited diet but she ate decent quantities of those things so I didn’t feel that was the answer but we tried by giving her a banana while we had bedtime stories. No difference other than she now wouldn’t go to bed without having a banana with her book!

We briefly tried ‘controlled crying’ – torture for me and her, we tried a baby gate on her bedroom door, we tried a GroClock (we’ve only just got rid of it actually!) and nothing worked.

Once she was at nursery we were able to get her into bed and she’d sit for hours renacting her nursery day – her teddies were all arranged around her and she was the teacher.  Of course I know now that she was processing her day but it kept her up for hours.  It was her anxiety, on display from an early age, and when I mentioned it in appointments as part of our ‘evidence’, it was cited as little world imaginative play and therefore she couldn’t be autistic.  Little Miss H never played tea parties or used her teddies/dolls in play, she was an upside down jigsaw kind of girl and lego and cars and stuff – this was not her playing, this was her processing and interpreting. Anyway I digress, it was keeping her from sleeping!

We were working through her senses and investigating what could possibly be a problem that she couldn’t vocalise.  We’d addressed the darkness of the room with blackout blinds, no that didn’t work.  So we added a nightlight just beyond her bed so it was dull but enough to let her see outlines. That worked for a bit, then it didn’t, then it did again.   We’d addressed the sound by playing her a lullaby CD and discovered the white noise that worked for her was a fan.  We’d addressed her hunger and thirst.

So our attention turned again to temperature.  She’s naturally quite a hotbot and she hated being swaddled.  We already had tried a fan to help with temperature and discovered she liked the white noise so we kept it but it wasn’t the solution regarding her temperature at that time. We made sure everything was cotton and we stumbled upon an article about some bedding that was supposed to help children who couldn’t regulate their body temperature.  We couldn’t afford it, but it got me thinking.  She was sleeping on a foam mattress and on researching I found that foam is known to be warm, so we set about changing her mattress to a traditional pocket sprung one. This definitely helped her temperature but not particularly her sleep.

All the while that we were undergoing assessment for autism it was a job to get anyone to believe what a challenge we were having.  Repeatedly we were asked if we had tried x, y or z.  It was just that she needed routine. It was implied we just weren’t doing it right! We were at our wits end, trying everything.  We hadn’t sat down together for a meal in years and i just wanted to have some awake time without dealing with children. I wanted my evenings, I wanted my sleep and I wanted her to have much needed sleep.  She kept getting ill and I put it down to being sleep deprived.  I put her anxious behaviour down to being over tired.

Continuing through the senses, determined to find the answer, we turned to smell.  She had zero sense of smell up until age 5 and I tried so many aromatherapy room sprays that she was oblivious to until we stumbled upon one that she seemed to like.  I remember the first time she mentioned any smell was with this night time spray, so that became part of the multi-layered bedtime routine.

We also spent a long time addressing what I believed to be anxiety.  We worked with her about worries and got a guardian angel and dream catcher.  We worked through visuals for the next day and had a timetable in place so she knew what was coming.  I realise now that we didn’t spend enough time analysing what had happened during each day but with age and our experience and knowledge growing we now know.

She’d also wake through the night but the worst thing for me was being up so many times in the night with her and then her waking super early.  She didn’t just wake up though, it was like someone had spent the moments she was asleep tightly winding a coil within her and on waking she’d PING into life.  It was 0-60 the minute she opened her eyes and I’d spend the whole exhausting day playing catch up.

We tried bribery, we tried persuasion and promises, we begged her, we even shouted out of desperation at times.  We tried everything. We were exhausted.

We eventually bargained with her that she could get out of bed and play/read quietly and not leave her room until her clock turned yellow.  We extended the time by ten minute intervals over a period of months.  This delayed her from getting us the minute her eyes opened – it took months but it worked and she is now pretty independent in the mornings if she’s has a good night and is not particularly anxious about anything.

One year into seeing the paediatrician who was assessing her, I mentioned our sleep deprivation for the gazillionth time and she finally seemed to hear me and suggested melatonin.  That was the moment our life changed!

For us it was a liquid miracle.  That first night, five years ago, she was asleep by 7.45pm!  It was such a miracle that I posted about it on Facebook!  Could this be it?  Was the problem solved? Did we have our evening back?  Could we actually sit down to have dinner together?

I’ll admit it didn’t completely cure her sleeplessness and she still woke in the night and got up early but to be honest we were so grateful to have our evening that we saw it as a huge win!

I remember during one assessment a counsellor, who was a supposed sleep expert, turned to me and said “…but she doesn’t look tired. She doesn’t sit yawning and she has plenty of energy”.  I found out later that this was one of the things that rose suspicion that I was “making things up” about autism in our household.  Because a (supposed) sleep expert didn’t see Little Miss H looking tired, I was allegedly lying about the problems we were having!!  It still astonishes me today the level of judgement and ignorance that we were faced with.  We were desperate and asking for help…  In the end we helped ourselves.

Since then we have continued to build on what works for her and we are now onto our second weighted blanket as her first one is no longer heavy enough.  There is no single obvious answer and over the years through trial and error, we have found it’s a combination that when blended together in the right way, work like a perfect cocktail!

The formula for a successful bedtime for Little Miss H now is dark but not pitch black, a fan for white noise and pointing at her to cool her down, she has to have deep pressure on her hip and shoulder joints whilst lying in bed and she has a lavender pouch, a hankie with my perfume and her favourite teddy bear to cuddle, She has water by the bed, a late snack and often an early morning snack too.  She has a worry monster, a guardian, a dream catcher, worry dolls, visual timetables, a consistent routine, she has comfy clothes and a snuggly blanket, she has her book, a pencil and notebook in case she needs to write things down and she needs to know where we are.  She still takes her melatonin, and she still has a pocket sprung mattress and cotton bedding.

She still wakes incredibly early – she just doesn’t need much sleep.  It’s part of her, it’s just who she is.  We accept that and we have turned our focus to teaching her how to rest, relax and use the down time.  We work on mindfulness and breathing exercises and we have a communication book that if she is worried about anything she can write me a message and leave it on my pillow.  I then see it when I go to bed, reply and leave it by her bed so when she wakes in the night she can read it and feel reassured.

It has taken 10 years and 8 months to get to this point.  We are still exhausted as she still does wake in the night and still has trouble getting to sleep and still wakes up early BUT compared to where we were, we’re doing well.  I have to thank melatonin.  For us it made a huge difference.  It still does.  On nights when we forget to take it for whatever reason we really see the role it plays.  I know it doesn’t work for everyone, but I am relieved and delighted that it does for us.  I’m still knackered but I’m not completely broken, not yet anyway!  We remembered the melatonin tonight and as a result I get my evening to myself.  I’m off to watch Grey’s Anatomy!! #simplepleasures #selfcare

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Autism Presentation

April is Autism Awareness month or as the autism community prefer Autism Acceptance month… and I’d like to make my presentation available to you all.

Forgive me reader, it’s been a long time since my last confession!  Seriously though, its been a long time since I last posted and a lot has happened here at H2Au towers.  I’ll fill you all in another time.  For now though, I want to focus on a Autism Acceptance.

As you likely know, I have published a festive advent calendar in the run up to the past three Christmases, all about autism, and in 2017 it went viral for the first time.  The album went viral again last Christmas and it has reached well over 20 million people.

So, on the back of that, I have put together a simple presentation that I have shared with schools and other organisations that want to introduce some information about autism to their members/audience.

April is Autism Awareness month or as the autism community prefer Autism Acceptance month.  So in regard to the fact that it is almost April, I’d like to make my presentation available to you all as my contribution to helping increase understanding and ultimately acceptance.

You can find it here Autism Presentation (H2Au)

Please send the link to friends/family/colleagues/employers and any society or group who may benefit from the information contained within.

If you would like me to come and talk or present it to you, please contact me via this page.

 

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

 

 

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.

Girls Grow Up…

…so let’s talk about girl stuff.

Let’s start with the obvious – little girls grow up to be big girls!  What is not so obvious though is how to support our girls on the spectrum as they approach and hit puberty.

Autistic girls may need more support and preparation for all the changes that come with growing up.   Not only is change hard but the hormones raging around can manifest in different ways, particularly behaviourally.  This can be very confusing and unsettling so an increase in anxiety around puberty is not uncommon.  Anecdotally girls on the spectrum are more likely to reach puberty at a younger age too, so being prepared is key.

You know your daughter best so you will know what approach will work best for her, but generally I’d say making the information available to her in a calm, neutral way is important so that surprises don’t happen. I think a lack of preparation is generally more traumatic than any potential anxiety in knowing about what is to come.   I also suggest non ambiguous language when discussing anything connected to puberty.  Use factual words like ‘period’ rather than euphemisms or slang like ‘Aunt flow’.

If you are at a loss and worried about how to support your daughter as she approaches puberty here are a few ideas:

Books

Remember our girls usually like facts so this is why I suggest books as a starting point.   I don’t think you can ever be too young to start having knowledge, in age (or cognitive) appropriate ways, about what growing up will entail for you and your body.  That is why I believe having books around that your daughter can dip in and out of at her own pace is important.  The visual, and demand free aspect of looking at a book is often easier than the demands and intense emotions (eg embarrassment, confusion) associated with a personal chat with you.

There are a huge number of books out there to help, suited to all ages, so search around.  Your local library will also have books like;

https://www.amazon.co.uk/Whats-Happening-Girls-Facts-Life/dp/0746069952/ref=sr_1_1?ie=UTF8&qid=1519643404&sr=8-1&keywords=what+is+happening+to+me

https://www.amazon.co.uk/Girls-About-Periods-Growing-Up-Stuff/dp/0340878282/ref=pd_lpo_sbs_14_img_1?_encoding=UTF8&psc=1&refRID=1ZX4S7GFA5X1ZNK1Y76Z

https://www.amazon.co.uk/Hair-Funny-Places-Babette-Cole/dp/0099266261/ref=sr_1_3?s=books&ie=UTF8&qid=1519643732&sr=1-3&keywords=hair+in+funny+places

A book I recommend specifically aimed at girls on the spectrum is;

https://www.amazon.co.uk/Whats-Happening-Ellie-conditions-Sexuality/dp/1849055262

Underwear

As girls’ bodies change, the need for different sorts of underwear can bring its own challenge.  The feeling of a bra can be insufferable for sensory sensitive people.

Seam free underwear is widely available now and starting with vests, then crop tops/sports bras may help a transition to bras. Build up wearing them for twenty minutes initially, or only overnight, or only during sports, and work her way up to longer.

Remember though that many adults don’t wear bras so ‘pick your battles’.

If her breasts are small and it causes more aggro to try and wear one, is it worth fighting over?    As her breasts become larger and/or she takes part in sporting activities it may be more important to find an option that works for her.  Again be led by her, and seam free may be a good starting place.

Most supermarkets and many high street clothing stores stock a range of seam free/seamless underwear and it is widely available on line too.

Examples are;

http://www.marksandspencer.com/seamfree-matching-items/p/ds04540a74fa838173c23ea97e7dba99b5?prevPage=plp

and I know a few who would particularly like this zebra print from Marks and Spencer😊

https://www.peacocks.co.uk/girls-2pk-seam-free-brief-blk-bl.html

http://www.smartknitkids.com/Products/undies.html

https://www.sensorysmart.co.uk/

Sanitary Products

The biggest change is of course when periods start.

Everyone reacts differently but on the whole, forewarned is forearmed.

The sight of blood can evoke an extreme stress reaction but preparation can ease the trauma.  Others will take it entirely in their stride.  Either way she will take her lead from you, so calm positivity rather than panic, pity or dread is the way forward!

Having rehearsals with pads is a good idea to get her used to the feeling.  Practice showing exactly how to put a pad in her pants. Details like when, how, why, how often and what exactly to do are important.  Clear conversation about how to keep clean is also important.

You can’t let any embarrassment cloud any instructions.

Being open regards to your own periods, if relevant, is also helpful.

Having relevant products in the house from early on is important too to get her used to seeing them, handling them and having them.

‘Sanpro’ companies do specific teen ranges and the little starter pack from Lil-lets is the ideal introduction;

https://www.lil-lets.co.uk/products/teen-range?gclid=cjwkcaia_c7ubrajeiwapczi8f3dafajdezrh9ynxu5hzgq0lo41ane3kplopgbr1njo3c2h6o8g3boc6zcqavd_bwe

Many sensory sensitive girls don’t tolerate disposable pads but there are alternatives available to try like reusable pads (and depending on age and flow; cups and period knickers).

There are a huge number of companies out there with their own variation so look for what matters to you, be it fabric/pattern/environment/supporting a small producer etc.

Some suggestions are;

https://www.etsy.com/uk/listing/551005602/interlabial-pads-random-set-of-5petal?ga_order=most_relevant&ga_search_type=all&ga_view_type=gallery&ga_search_query=lorraine%20makes&ref=sr_gallery-1-1

http://www.cheekywipes.com/cloth-sanitary-pads-kits.html

https://www.babipur.co.uk/reusable-menstrual-cups-pads.html

https://www.earthwisegirls.co.uk/reusable-sanitary-towels-c-1.html

http://www.honouryourflow.co.uk/

http://www.boobalou.co.uk/information-2/information-advice/cloth-menstrual-pads/

http://luxurymoon.co.uk/index.php?main_page=index&cPath=3

https://wuka.co.uk/

(*disclaimer – these are not recommendations as I do not have first-hand experience of these products)

There are also websites/YouTube channels dedicated to periods and becoming a teen;

http://www.becomingateen.co.uk/home

https://www.youtube.com/user/beinggirl

https://tampax.co.uk/en-gb/tampax-articles/my-first-period?gclid=CjwKCAiA_c7UBRAjEiwApCZi8co7Li25icBYuqFd0zzW3qE6oXj–bxVYEhVbIWcd1ma3yZ6iK3U3xoCMnoQAvD_BwE

Calendar

Encourage tracking from day one.  Teach her to log her period days in a diary/calendar so she can identify a pattern.  This will help manage any potential anxiety especially once a pattern presents itself in terms of regularity.

A diary will suffice but there are apps out there designed for the purpose.  Word of warning – just check they are age appropriate content wise before setting her loose on one.

 

Finally, remember that she is still your little girl even though she is turning into a big girl and, this is the harder bit, remember her hormonal outbursts are as much a cry for help as her new-born mewling was not that long ago!

 

Image features;

Marks and Spencer underwear http://www.marksandspencer.com/seamfree-matching-items/p/ds04540a74fa838173c23ea97e7dba99b5?prevPage=plp

Lil-lets teen range https://www.lil-lets.co.uk/products/teen-range?gclid=cjwkcaia_c7ubrajeiwapczi8f3dafajdezrh9ynxu5hzgq0lo41ane3kplopgbr1njo3c2h6o8g3boc6zcqavd_bwe

What’s Happening to Ellie Book https://www.amazon.co.uk/Whats-Happening-Ellie-conditions-Sexuality/dp/1849055262

 

***I have not been paid to promote or endorse any products mentioned in this article.

 

 

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]