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/

 

 

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What Autistic Adults have Taught me about Parenting my Daughter

h2au-q-to-adultsWhat Autistic Adults have taught me about Parenting my Daughter

As a parent to an 8 year old girl we have our share of frustration, cross words and clashes.  We also have a strong bond, a close relationship and enjoy each other’s company.  Obviously I love her more than words can say and am beyond proud of her (yeah, yeah – blah, blah, blah!)

I have noticed however that traditional parenting techniques are not always successful with her and whilst being ‘strong willed’ is one of many positive traits she seems to have inherited from me, there is more to it!  Another factor that adds a different dynamic to the relationship is that I am Neurotypical and she is autistic.  I am conscious that I don’t always respond to her the way she needs.

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In an effort to gain some insight into what I could do to improve my parenting of her, I turned to Autistic adults on Facebook and asked ‘what is one thing you wish your parents had known when you were growing up?’  This is what I learnt.

  1. To Recognise Her

Acknowledging she is Autistic is the first and most powerful message that came across.  To accept her for who she really is.  “The chances are she already knows she’s different” so giving it a name and recognising it is empowering for her.  Acknowledging her for who she is is vital.

Calling it something isn’t enough though – it is about recognising what it means. It is about recognising that;

  • She will be naïve, trusting and potentially vulnerable and that she will need love and protection even though she may not ask for it and even if it appears like she doesn’t
  • Autistic inertia* is a real thing, she is not being lazy, procrastination stems from a “significant emotional barrier” and to recognise that she will be struggling
  • She will need recovery time
  • “some kids need help making friends, some just don’t care”, she may not want to socialise and that’s OK, but if she does she will need to be guided
  • Her perception of reality will be different to other children’s/mine
  • Her sensory needs and desires and her routine needs will be different from mine
  • She is externally motivated, visual instruction and physical reward will be more effective than verbal instruction or verbal praise
  • With confidence she will work hard and achieve great things
  • She is different and not to “pressure her to be normal”

Something else that came up was “don’t be embarrassed to have a child that is different” – whether we mean to or not I think sometimes as parents we change our approach based on what setting we are in and that is often driven by the fear of what others will think.  This exercise has taught me to try not to care what others think!  (I will add that I have never been and will never be embarrassed by having a child that is different).

2.  To Respect that her struggles are legitimate and real. Respect that;

  • Transitioning IS hard, and to allow for that by giving enough time to switch activities
  • Crying is her way of saying she needs something but doesn’t have the words to explain, no matter her age
  • Interpreting things can be hard for her, even praise – she may not be able to tell if I am sincere, so I need to incorporate behaviours as well as words to show her what I mean. Model rather than order if you will.
  • She NEEDS alone time – that she needs and wants time in her room and not to force her to socialise
  • Respect her sensory issues – her reactions are involuntary. For example if she gags at food or a smell, it is involuntary not just her ‘being dramatic’ or ‘difficult’

One woman explained that she wanted her caretakers to understand that she wasn’t “highly strung” as they called her, in fact she was “baffled by life and society itself”.  Truly humbling to hear those words when you are neuro-typical, how much we take for granted.

3. To Teach her everything. Not to make assumptions that she will just ‘pick things up’.

  • To realise that she will be doing her best but that she will still want my help and guidance even though she may not ask for it and in the case of my daughter may actively fight against it!
  • She will need to be taught life skills
  • She will need to be taught HOW to do everything from wiping a table effectively to how to tidy up and organise herself
  • To break down every activity to smaller steps to teach her how they connect to each other – a bit like you break down dance moves to learn an entire routine!
  • To recognise that she is externally motivated so physical rewards are likely to be more effective than verbal praise alone
  • That I need to spell out my expectations and explain everything because she is not a ‘mind reader’
  • That if she appears ‘highly strung’ she is probably struggling to understand something
  • Avoid using sarcasm, rhetoric or hyperbole
  • To encourage and nurture what SHE is good at ‘not what other girls her age are doing’
  • Encourage her to take responsibility
  • Show her that she is valuable and perfect as she is and she is “not wrong to be different”

4. To be Available to her

  • Show her my unflinching love and support
  • To be patient and allow her time to fully process information
  • forgiving
  • Understand that when she is questioning me/things she isn’t being obstinate, she just needs answers
  • Show her I’m listening and really hearing her
  • To tell her I am sorry when I get it wrong

5. To continue Learning together as we go. I need to learn at each stage;

  • That she doesn’t need to be forced into Neurotypical behaviours
  • Not to compare her to her peers
  • Angry outbursts will be because I haven’t accounted for the steps above
  • Anxiety is a bully that overwhelms her and one that she is still learning to control
  • Her facial expressions do NOT match her inner emotions
  • I must watch, listen and learn who she is and not make assumptions
  • Find ways to deal with my frustration – in the words of one woman “I wasn’t trying to destroy my parents happiness”

 

Some of this, we as a family already know and do, we are fundamentally on the right track and mindful of doing our best.  The rest of this we need to remind ourselves and work harder on.  Much harder!

Having neurodiversity in a family is fabulous and challenging in equal measure for all of us. We won’t get it right all of the time but having the intention and motivation to at least try our best has to be good enough.  Then we can trust in the fact that ultimately her happiness will come from being her true self.

With thanks to the Autistic Women’s Association and other facebook users who answered the question!

*Autistic Inertia is basically a state of wanting or needing to do something, but being completely unable to do it, almost like a paralysis. (https://nolongerinabox.wordpress.com/2013/03/12/autistic-inertia/)

https://www.facebook.com/H2Au.thestuffofourlife/photos/a.660108120829064.1073741829.474589252714286/748272602012615/?type=3&theater

Christmas Chaos… you can’t outrun the avalanche

This time of year is busy for everyone but we find it exceptionally so.
We have birthdays as well as Christmas to plan and prepare for, five on the same day but we also have step- and parents, nieces and nephews, aunties and uncles, god-children and friends’ birthdays in December and early January so we have to organise for those. We have the usual school commitments and Little Miss H’s Ice Skating shows to prepare for and be available for, as well as the usual ‘Christmas Chaos’, as I call it.

It means that it can all be very exciting which in ‘autism speak’ means ‘different’ and ‘overwhelming’ which then has a knock on effect on all of us.

It’s also a poignant time of year, as it was when Tiny Miss was diagnosed and whilst we have so much to celebrate, there are still challenges that can’t be ignored.

So please forgive my recent relative quiet spell. I am still here, sharing and recommending my good friends’ pages. I’m still answering emails. I perhaps am not quite so forthcoming with as many FB memes just at the minute, so please forgive me and bear with me.

There is an element of ‘I can’t outrun it’ going on in my life as I am attempting some self care too so that I can cope with all that is happening and yet to come. My health means I need to pace myself and pick and choose and allow plenty of recovery – sometimes its a waste of energy to try and outrun things that you know are coming. Sometimes just letting it wash over you is the best course of action. We’ll see if I’ve got the right approach after the fact but regardless I need to manage as much as I can for as many people as I can, including myself.

You see I’ll let you into a little secret – it’s my birthday on Wednesday (same day as Tiny Miss) so I try and manage to enjoy MYSELF as well as look after everyone else 😉 xx

h2au-sometimes-when-youre-feeling-snowed-under

A darker side of Autism

** trigger warning**

Below is a post from my personal Facebook timeline from two years ago.  I posted it not long after we’d moved up here to Scotland.

Those of you who have read past posts may be aware that we have had a struggle getting support since our move to Scotland.  That despite a firm diagnosis of Autism some ‘professionals’ doubted Little Miss H’s diagnosis.  They even accused me of making it all up.  We have been accused of bad parenting and emotional abuse; it was claimed by some that getting her diagnosed was emotionally abusive! (I’ll just leave that there for the moment but I have a separate post in mind about that for another day).

The fact that those accusations happened at all is beyond belief but when I look back at behaviours and manifestations that Little Miss H has endured and suffered through (and still does) it makes my blood boil that there is so little compassion (and support) for such a little girl who deserves to be acknowledged for who she is, specifically as an Autistic little girl.

It breaks my heart that a child would feel such anxiety that she’d pick her skin to the point it bleeds.  She has done it since she was very young but it had just dawned on me that what we were dealing with had a name.  That name is ‘self-harm’.  Obvious with hindsight I know.   At the time though it hit me like a sledge hammer, she’d been doing it since she was 2 or 3 and at the time of the post she was 6.  The impact this had on me was huge.  The realisation that this was a very real aspect of her autism felt overwhelmingly suffocating.

The fact that she felt anything strongly enough to drive her to the point of hurting herself made me feel like I’d let her down.  The panic I felt that I hadn’t previously done more to fix it or support her through this behaviour left me feeling substandard.  The fact I had ‘allowed’ her to feel so bad broke me inside.

Obviously we had tried many things to help her not pick her skin.  I thought it was partly sensory seeking behaviour and we tried many distractions and redirections.  I did notice it got worse with anxiety and we tried to deal with the anxiety itself rather than the behaviour.  It’s not like we had ignored it, been blind to it or not been pro-active about trying to help her.  It’s natural that I felt sad but why did I feel so bad, so guilty?

Part of my reaction was to force myself to acknowledge it out loud.  Part of my reaction was to share in case it helped anyone else and part of me wanted to educate others about the generality of this, so often unspoken, part of autism.  Part of me though just wanted to say ‘my poor baby is struggling, I find that hard and life isn’t perfect’.

So I shared on my personal time line.

I got so much support from many friends but was criticised by some too for talking about it so publicly.  How very British, to suggest I keep it behind closed doors.  I felt ashamed that I had posted about it when I was criticised.

I also realised then that Facebook served as more that a social media outlet, it was part of my support network.  I had moved to a new place where I didn’t really know anyone, was struggling to get professional support in place for all our needs.  Facebook was a world where people ‘got it’, so I resolved not to feel shame and to embrace the reality of our life.  I need the support network my ‘invisible’ friends give me.  (That’s you lot by the way – thank you!)

More though, telling our story may help someone and if we can make a difference in one person’s life, make one person feel less alone, then it’s all been for something.

So to those that find it triggering I’m truly sorry, please don’t read anymore and come back for the fun stuff elsewhere on my FB page later – hugs and strength to you.

To those who just don’t want to know scroll on by.

For those of you who want to learn, understand and support – the original post is below.

“So Little Miss H is a self harmer.  A horrible statement to make as a mother – I feel like I have failed her.  Her Autism causes her such anxiety that she hurts herself and makes herself bleed.  She is 6.  This in itself is sad enough but what breaks my heart is she now seems to realise that it’s not “normal” behaviour so she is now hiding it and lying about it. This further masks the problem that causes her to do this in the first place making it even harder to identify the cause and help her.
It’s no wonder that the average age for diagnosis of Autism in girls is 12, the professionals involved with Little Miss H still can’t always readily see her Autism manifesting itself and if she’s now hiding some of the most overt tell-tale signs how on earth am I going to get her the help she needs?
I feel like I am at the bottom of a hill….every time I try climbing the hill it turns out to be a volcano, erupts, pushes me back down and just grows into a bigger hill….. sometimes life is a bit of struggle here”

I’m thrilled to say that we are managing this aspect really well at the moment – she still picks when anxious but her self-awareness as she matures is helping us find other, healthier coping mechanisms/management strategies and her scars are fading.

We still don’t have support up here but I have learned that I am enough.  She needs me, I am here and I always have and will do my best for her.

To my brave, strong, amazing Little Miss, you are safe and I love you.  You will never have to walk through life alone.  I am so proud of you, every single incy wincy bit of you.  Thank you for being you, Mummy xox

Upside Down Days and Other Food Adventures of a ‘Fussy Eater’

Little Miss H had allergies from birth. It turned out she had a dairy allergy so although initially purely breastfed her diet needed to be modified.  In real terms that meant a dairy free diet for me. We had no problem with that especially as we saw an improvement in her symptoms.

Once weaned we had the fright of an anaphylactic shock after giving her scrambled egg – it wasn’t pretty.  That added another allergy to her list.

When she was four she kept saying her mouth hurt after eating crisps and that turned out to be a potato allergy – apparently not as uncommon as I thought, something to do with the nightshade family.

Add all this to her sensory preferences then there were very few foods she would eat – texture and temperature being a big problem for us.

Texture wise nothing claggy or gloopy is tolerated even to this day.  She gags at the tiniest bit of porridge, cheese sauce, béchamel (white) sauce, custard, yoghurt, syrup and the like.

She would tolerate her prescription formula milk and water.  To this day she only has water as a drink, even at parties.  Now and again if she’s in the mood and I mean like possibly three times a year (and she doesn’t drink it all), she might have chocolate milk but that’s only been since she was 6 and a half, I think she just likes the idea since she went on a café visit with a local Autism Charity that runs social groups for girls and they ordered hot chocolate!

She always liked her food cold – preferably fridge cold.  Once I started adding (prescription) formula feeds to her diet that suited us as it meant we didn’t need to faff about warming the milk!  Nothing warm could get past her lips.  As she has matured she tolerates warm food now but her preference still is room temperature or cool.

As a baby and toddler there were times when Little Miss H’s diet was so limited I was worried about it but more than that, to be frank I got bored.  In my past life I was a chef and food is a great passion of mine so it was also soul destroying.  I blamed myself thinking I had done the weaning phase ‘wrong’.  I’d failed at getting the most basic thing right – feeding my child.

Running alongside this there were other elements of her character coming out, like the tendency to be controlling and very demanding, I was conscious that it could all be toddler manipulation so I got creative with my approach.

I did lots of different things to try and help sort this tricky eating, determined that she would not be a ‘fussy eater’.  She still is limited in what she eats but I now understand better the motivation and reasons behind it.  She has an enormous appetite, with a fast metabolism and I do think food is also a coping mechanism for her anxiety so ensuring she eats healthily is something I am mindful of for the future.

Here are a few of my approaches on the off chance it helps someone else.

I gave her limited choices, ‘would you like a or b?’ for example.  I lost count of the number of times she’d opt for c/d/e or f which weren’t available to her and yes it became a battle of wills many times.  Anyone who knows me though will recognise that Little Miss had probably met her match so eventually a or b would be chosen (or she’d opt to go without) but it was exhausting and time consuming.  At times I did add something else into the equation to make my life easier.  As an example I would allow option c, but I would add a caveat like ‘OK you may have option C if you promise to help mummy get you ready for going out after lunch’ or something along those lines.  I felt it gave her the chance to ‘succeed’ at negotiating but on my terms and we found our groove (ish) – it largely worked for us.

I encouraged her to help in the kitchen and in food preparation.  She loved messy play so for her this was a natural extension but it had zero impact on what she ate.  Genuinely, at that age it made no difference at all so please don’t lose heart if the same happens to you.  I had so many people, often of an older generation, suggest that if she helped prepare it she would eat it.  I know that does work for lots of children and that is terrific.  It’s also true that it doesn’t work for all children and that’s OK too.  But it became a fun way for her and I to bond and play especially after Tiny was born.  She’d help me prepare Tiny’s food when it came to weaning her and she became confident at safely using a peeler and an appropriate knife.  Her attention span was limited unless I made it actively fun so I turned it into a learning game whenever I could but it really taxed my energy and creativity and at times I didn’t have it in me – exhaustion and a desire to just get the job done did mean I couldn’t be bothered to ‘turn it into a game’!  With Tiny screaming and Little pulling on me speed sometimes was the best option!

I made food fun. I would cut sandwiches to tiny sizes and called them dolls house sandwiches, we’d use cookie cutters to do great shapes – her favourite being the star because I always told her she was my super star.  We would cut vegetables of different colours up very tiny and stir them through plain rice and called it treasure rice as the vegetables looked like jewels, this is still a firm favourite today!  We also made the food look appealing by arranging it on the plate.  I’d stand sandwiches up on end to make a castle, or have the sandwich like petals of a flower and other such designs that appealed to her.  Of course we made faces too!!

I’d introduce choice where she didn’t have choice. An example, she’d be having carrots and that was not optional but she would get to choose how we prepared them and would describe how she wanted her carrot cut up – like sticks (she was a real forest forager), like coins (treasure), ribbons, fairy wands, flowers – you get the gist.

I would serve the whole meal at once. If her meal was a sandwich, fromage frais and fruit I would serve it all at the same time and it was up to her which order she ate it in.  The pudding was not a reward for eating her main course.  If she only ate her fruit and fromage frais that was fine by me.  Even now when I am cooking tea she will have fruit or fromage frais first as she is so hungry and it calms her to wait patiently for her main meal.  Now that she’s older we often now serve pudding after the main course but I’m pretty flexible about it.

Distraction.  This is a great technique which helped us loads.  We would play a game during the meal and before each turn she had to take a bite, or we’d play music and have a table disco with a section of the plate eaten before the next song is played for example.  Yes we even put the TV on sometimes or have a screen at the table – I can see the aghast expressions of some but I promise you it helped us and hasn’t destroyed the sanctity of family meals!

Watching Cookery programmes and reading cookery books.  I watch cookery programmes on TV and it was something we could do together and she became really obsessed with ‘I can cook’ and ‘Junior Masterchef’.   She has a range of cookery books that she often reads them just for fun.  Initially our babysitter got a bit of a surprise when Little Miss presented a cookery book and asked for it to be read as her bedtime story, we were quite used to it so thought nothing of it but I suppose it is quite unusual!  We choose recipes to cook out of her books.  She doesn’t always eat them but I believe in time that’ll gradually change.  Regardless, an interest in cooking is a great life skill to have so I’m in favour of it.

 

 

Marbles.  We have a reward system that if she earns x number of marbles she can choose a reward which ranges from playing a game with mummy or daddy to choosing a toy and we vary it and allow her to choose to keep her motivated.  She earns a marble for trying a new food.  She is not forced to try new foods.  She is encouraged to touch, feel, smell, lick etc any food she likes but to earn a marble it has to be tried.  We have a rule in this house that you can’t say you don’t like something until you have tried it and trying it is swallowing a proper mouthful down to the tummy.

Sitting at the table.  Every meal is at the kitchen table. No debate.

Family meals.  With my husband’s work it is not possible to have our weekday meal all together so at weekends we try to have family meals where we all sit down at the table and I serve the food in serving dishes in the centre of the table for people to help themselves.  Without fail she is the most adventurous at trying food when it served in this way.  We allow the girls to serve themselves but of course help them where necessary but spills don’t matter and keeping the atmosphere light and calm is a priority.

Opting for school meals.  Her diet was so limited that I couldn’t face making a dry ham sandwich every day for the rest of her academic career so I opted for her to eat school meals.  I also felt socially it would be better for her too.  It has been a poisoned chalice though as she does try more new foods out of necessity but she has also copied other children in starting to refuse some foods that she previously ate, specifically broccoli.  It has worked for us and she undeniably eats a broader range of food due to being exposed to them at school.

Last but not least Upside Down Days.  This is possibly my favourite of all my attempts to take the pressure off the food issue.  I came up with the idea when she was in a phase of eating an extremely limited diet and was exhibiting very rigid behaviours so I wanted to show her that mixing things up could be fun.  Initially she was reticent about the idea until I suggested spaghetti for breakfast!  She thought that was hilarious so we mix the day up. We have tea for breakfast, breakfast for lunch and lunch for tea or any mix up of her choosing.  She chooses and we go with it.  The answer is yes to all her suggestions so I make sure I only offer an upside down day when I know it can work!  It’s something we will keep in our arsenal as it is fun and a great way of snapping them out of a rut!

A combination of all of the above coupled with perseverance have resulted in her eating what is now a very broad diet compared to what she used to eat.  The point is the pressure is off and food isn’t the crisis it once was.  The dining table is no longer a battle ground and meal times are more relaxed.

I’ve been through all the experiences of the ‘helpful’ suggestions from nursery about ideas to put in her lunch box where I just smiled and thanked them through gritted teeth.  I’ve been through the tantrums of her insisting she wants a packed lunch at school rather than the school cooked meals.  I’ve been through the desire to force a spoonful of food into her mouth to prove to her she’d like it! I’ve been through the stand off where she refused to eat and I refused to offer her anything else.

I’ve been through it all and I get it.  It has not been an easy journey.  It is a journey we are still travelling.

The best advice I ever received was from our great GP, Dr Brown Bear (Peppa Pig fans will understand that one) who said “if all she’ll eat is kitkats, give her kitkats”  (other chocolate bars are available).

The point he was making is don’t stress it.  Get calories of any sort into her. Don’t make food an issue.  Enjoy life.  Now she didn’t eat chocolate of any sort then which I thought was ironic but I got the point and applied it as best I could, to the extent that she has ketchup with everything (except perhaps coco pops!).

I’m a chef, I’m a foodie so for me it’s been an endless source of frustration.  I will never give up trying to broaden her range but that’s MY thing, not hers.  I respect her choices and if she doesn’t want to try something it’s FINE. Genuinely.  But I will keep offering.

I understand the temptation to force them to eat.  We want to get healthy stuff into them, your motivation may be organic or vegan or home cooked rather than convenience, or manners or starving children in another part of the world, or whatever but realise that is YOUR thing.  Their little body is theirs.  They are entitled to their preferences and they are entitled to their choices.  Support them and take the expectation and pressure off and make sitting at the table enjoyable and eating will come (eventually).

Good luck and Bon Appetit!

 

An Open Letter

We relocated from England to Scotland two years ago and arrived with formal diagnoses in place.  Our transfer of support should have gone smoothly yet we have found ourselves in the position of having to justify those diagnoses and fighting for acceptance.

It wasn’t easy to get Little Miss H diagnosed, everything took time, it was a slow process with long waiting lists but after presenting enough evidence and after assessment over a prolonged period the professionals found that she met the criteria for an ASD diagnosis.  Our family are in no doubt that it is the right diagnosis given her father is also diagnosed and we received it as a welcome relief.  It enabled us to access supports for her that otherwise wouldn’t have been available to us and goodness knows I was on my last legs doing it all myself – I needed help.  More than that I needed recognition of our reality.  I needed someone to ‘see’ us.  This was all at the same time that Tiny Miss H was under investigation with ultimately being diagnosed with a very rare chromosome deletion.

Regarding my Tiny Miss and her diagnosis I was told by various professionals at the time; “Good catch Mum”, “Wow, they always say the Mother knows”, “your instinct was spot on”, “she’s very lucky to have been diagnosed so young, it’s a chance to make a positive impact on her prognosis”, “not many would have caught this so young, well done” and so on.

I even have a hand written letter from one of our most significant professionals involved with us, who on hearing we were moving to Scotland wrote to tell me what a pleasure it had been to work with us, to have been part of Tiny Miss H’s progress and she wrote about me “you are the PERFECT therapy mummy”.

We had very positive relationships with mutual respect and I was reluctant about losing that when we moved.  I was reassured by many that I had established good relationships once and I’d do it again with great referrals up to their counterparts and it would be much easier this time round.

Imagine then soon after moving up here to be falsely accused by social work of emotionally abusing my children by having them diagnosed, of ‘heightening’ their needs and making up their conditions.

To be accused in essence of Munchausen syndrome by proxy – they didn’t say as much in those words but the implication was clear.

It has been 18 months of hell.

It’s been a hard fight to clear my name but we are now gradually coming through the other side with the accusations now withdrawn, vague apologies given for our distress but a general lack of support to help us recover.  The shock, hurt, damage to my self-esteem and erosion of my trust is still an ongoing issue as a result.

We have the advantage of living on the border of two healthcare areas and we were accessing services for the children in area A, since the debacle of the accusations we have now transferred over to area B to have a clean slate and a fresh start. A second ‘move’ (even though physically we remain in the same place) means tens more appointments and the whole rigmarole of meeting even more new professionals.  Exhausting but worth it for the clean slate.

At one of these appointments yesterday I was made aware of a report that I knew nothing about stating that a consultant who had met us for an hour, hadn’t seen much to support [Little Miss H’s] diagnosis.

This undermined the fresh start and all it did was cause confusion and raise questions from the new consultant which then led me to having to justify and explain and relive the nightmare.

Below is an open letter to the consultant who wrote that report, which I have written as a reaction to the above.

Dear Professional

I come to you with trust and an assumption that you will use your power wisely.

I trust that you will listen and that you will hear us.

I trust that you will respect us and appreciate our story.

I trust that you have experience in the subject we are speaking to you about and that you have faith in your colleagues.

I trust that you will afford me mutual respect and trust.

I understand that you spent a long time learning and training to become a doctor, I respect that fact.

I expect you to respect my intelligence, my experience, my intuition and my intent.

I expect to work with you, to be a team, to work together.

To behave one way to us and then write something else in a report to your colleagues that I have no knowledge or sight of is a betrayal of that trust. .

Your casual dismissal of your NHS colleagues’ diagnosis of my daughter is astonishing and quite frankly worrying.  You discredit them without taking time to question or investigate.  That by extension, in my eyes at least, discredits you.

My mind boggles at the arrogance of your reaction.  To immediately assume you are right rather than resolving to learn from this diagnosis, from us, from her.  Where is your enquiring mind, that is presumably needed for continual growth as a doctor?

It is not fair to put my child at risk of lesser service and treatment by casting doubt and confusion over what was an unambiguous diagnosis.  By casting a shadow of doubt you also serve to undermine me and my credibility in my role as her main advocate.

What makes you think that after an hour long appointment with me and my daughter you know her better than the team who diagnosed her over a period of two years?

That hour with you was not an in depth assessment, it was a surface level chat with me whilst my daughter tugged on my arm to leave until she was persuaded to sit, draw and colour in ‘nicely’.

You didn’t express any doubts to me or give me any opportunity to explain how her autism affects her.  Not once did you ask how the diagnosis was reached, if you couldn’t see it, not once did you give any indication that you disbelieved us, not once did you give me the opportunity to clarify for you the manifestations of her autism – you never asked.  This shows your lack of respect for me and for my daughter’s diagnosis.

Your callous disregard for my opinion, my experience and my expertise is insulting.

As a mother I KNOW MY CHILD.  That is all I should need to say, but if I need to justify myself my degree (Bsc(hons) in Psychology with child development being my area of specific interest) and my life experience which includes nannying and teaching children supplements my parental experience.

I have lived with autism, ADD and dyslexia in my husband for 11 years and I have experience of parenting an autistic child for 8 years.

I’d say in terms of both intensity and time this is at least equivalent to specialist training that you undergo to become a consultant.

I’m certainly not saying I could be a consultant but I am saying that I am an EXPERT in my child and my child’s condition.  Where your experience is broad, mine is specific.  But make no mistake it is no less valuable.

How arrogant of you to dismiss my daughter without even endeavouring to understand her diagnosis.  Every case of autism is unique and therefore an opportunity to learn.  How many girls on the spectrum have you dealt with in your career?  Regardless of the answer to that your level of expertise will not be more than mine in the case of my daughter, so at the very least the wealth of my experience is a valuable resource to be used rather than ignored.  We could have worked together for her benefit.  Instead my energy available to her is diluted by having to spend my time justifying myself and her diagnosis unnecessarily.

I can rationalise and justify why I know you are wrong, you cannot reasonably explain why you believe your colleagues who diagnosed my daughter and me to be wrong.

The average age for ASD diagnosis in girls is twelve.  The reason that early diagnosis is so hard in girls is that some, often in the high functioning section of the spectrum, mask, mimic and hide behind coping strategies.  They are chameleons in society.  They are masters at pulling the wool over your eyes.  They will only show you what they want you to see.  One often can’t tell that someone is autistic just by meeting them briefly.  IT IS A HIDDEN DISABILITY.  So from a medical stance the problems aren’t recognised but it doesn’t mean they aren’t there.   We come to you for help.

My daughter’s behaviour in appointments is often unrecognisable to me. She often behaves like a different person to the little girl we live with – she can be a Jekyll and Hyde.  She performs a role – the part is that of a little girl behaving how she thinks strangers expect her to.  She’s not relaxed at all.  It’s exhausting for her.  We spend a long time preparing her for appointments and it pays off.  She usually is distractable enough for me to focus all my attention on imparting a huge amount of information in a very short space of time.

She also behaves differently at school.  My husband (also diagnosed ASD) behaves differently at work than at home.  This is not unusual and is a very key part of high functioning ASD.  Having said that it is also a matter of interpretation.  My daughter’s manifestation of ASD is often visible if you understand what to look for.

Just because on meeting my daughter you can’t see her autism doesn’t mean it isn’t there.  It doesn’t mean she doesn’t need support.  It doesn’t mean I am making it up and it doesn’t mean you should discredit and dismiss us.

The very fact that my daughter was diagnosed at age five means firstly that medical professionals, trained in and with experience in the field of autism found her to be meeting the criteria for a diagnosis and secondly it’s meant that we have been able to access support.

This diagnosis has enabled EARLY INTERVENTION which in turn has meant that we have helped my daughter with coping strategies, we have worked on social skills and we have in place support, interventions and strategies that make her life easier for her to manage.

Add this support to a predisposition to mask and mimic means that meeting my daughter briefly probably means you won’t be able to tell she’s autistic and that’s OK.  It means it’s working.  It means our hard work to support her is paying off and her hard work is all worthwhile and it means that early intervention is the key.

If it is hard to tell that my high functioning daughter is on the spectrum then I take that as a compliment as a lot of blood, bruises (literal and metaphorical), sweat, tears and hard work goes in to that outcome.

It can take as long as eighteen months for my daughter to ‘let you in’ if ever, in terms of showing her true self to you.  Many people, even some of our own extended family haven’t seen some of the true issues that we as a family have to deal with due to my daughter’s autism.

Now she is eight she can vocalise that she behaves in a certain way at home because it is her ‘safe space’ and she ‘relaxes’.  This states to me that life for her outside home doesn’t feel safe for her and that it is hard work and not relaxing for her.  We all have a duty to understand that and respect that.

Being diagnosed at five is unusual and significantly younger than the average age of diagnosis.

The fact it is unusual must therefore mean that there cannot be that many doctors out there with extensive experience of such young girls on the spectrum.

Rather than suggesting ‘you haven’t seen much to support her diagnosis’ – how about resolving to learn from her?  I would suggest a better phrase would be “I don’t have enough experience to recognise it in her” then add it to your bank of experience.  Act with some humility and learn from it.  YOU DO NOT KNOW IT ALL.  After all if you’ve met one person with autism, you’ve met one person with autism.

If she had blood tests showing something you’d accept them without question.  Why not accept behaviours, traits and struggles as equally telling.

It is your duty to let the evidence guide you – but if you don’t listen to the evidence it can’t.

As a (loving, kind, resourceful, credible, rational, intelligent, eloquent, instinctive and intuitive) parent I know my children.  Life with them can be tough.  Please do not make it harder.

Thank you.

From a disappointed Mummy.

Tiny Miss H: Hypermobility + Hypotonia = Fatigue

As part of advocating for a child with special needs, one of the main roles is to make any adults working with them aware of their issues.

This becomes very difficult when they have a nameless condition that no one understands.

We relocated from England to Scotland when Tiny Miss is H was 2 years and 6 months old.  Not having the benefit of being aware of her from birth, the new professionals in her life needed coaching.  Much of her medical paperwork took over a year to be transferred and it seems that much went ‘missing’.

When she started nursery it then fell to me to brief them.

Below is an extract of the information we had to provide and I hope it goes someway to explaining what the issues are that she faces as well as highlighting how even something as routine as starting nursery is actually pretty complicated for a special needs parent.

“Tiny Miss H (TMH)

Diagnosis – Rare Chromosome Disorder

causing; Global Developmental Delay, Hypermobility, Hypotonia, Mild Dysmorphia, and Sensory Processing Disorder.

Background – TMH was very delayed in her development and was diagnosed just before her first birthday (after extensive testing) as having a rare chromosome disorder.  We were told then by her neuro-disability consultant that she may never walk or talk.  At the time she had trouble feeding, only had open vowel sounds, didn’t babble, couldn’t weight bear on her legs at all, was not mobile and had only just learnt to sit at 11 months after intense physiotherapy since 6 months of age.

She has achieved independent mobility and speech through early intervention, years of intense therapies, the use of Makaton, a lot of hard work and having a persistent attitude and a sunny outlook.  She is at risk of other issues potentially developing as part of her condition eg seizures.  We have no guarantees about what her future holds and we take her development one step at a time.

Hypermobility

Hypermobility is excessive movement of the joints which leads to instability.  This results from changes to connective tissue, particularly collagen which results in laxity of the supporting structures such as ligaments and tendons.

What this means is that her joints are not stable.  In order for her to hold her joints stable her muscles compensate for the weakness in her ligaments and tendons which means they do more work that they should.  This causes fatigue, both of the muscle itself and for TMH.  As she tires, her ability to hold her joints steady decreases and she becomes unstable (wobbly, clumsy, less intelligible etc). This can also cause her pain.

Hypotonia

Hypotonia is a state of low muscle tone (which is the amount of tension or resistance to stretch in a muscle) and reduced muscle strength.

Normal muscles are never fully relaxed and always have some degree of tension or resistance, TMH’s are weak and relaxed.  For her to use her muscles then requires extra effort which in turn takes more out of her.

Add this to the hypermobility and it means for TMH to achieve the physical tasks you or I do with ease, her body has to work disproportionately hard.

This extra effort means she is prone to tire more easily and much faster than her peers.  It also means she is at risk of injury.

Hypermobility and hypotonia combined caused her to be very delayed in her physical development. For example her walking, she took her first steps at age 2 years and 2 months after 20 months of intense therapy.

Aids to help her include her Piedro boots, Fox-Denton chair and buggy.

Whilst TMH is technically capable of sitting in a normal chair, doing so uses a disproportionate amount of energy for her – this in turn means her body is so busy working at balancing and holding her joints still, that she doesn’t have the resources spare to access the full learning opportunity of the activity she is partaking in.  However when she sits in her Fox-Denton chair, she is supported which frees up her energy to focus fully on the task in hand.

Likewise walking somewhere eg to an activity puts a lot of strain on TMH’s body which causes her muscles and joints to get tired which then means she is less able to fully achieve her potential during the activity at the destination, she is then at increased risk of accidents and mentally less able to engage in the learning.  Excess physical activity can also result in pain for TMH and regular breaks are required.  Having a finite amount of energy means it needs to be saved to be used appropriately eg in the activities rather than getting to and from the activities.

Fatigue will impact on multiple things including (but not limited to); her attention span, processing speed, her speech clarity, her ability to chew and swallow her food, her sleep quality (eg if in pain or if she hasn’t eaten enough as was too tired to chew), her risk of injury, her mood.

It is not unusual for TMH’s abilities to fluctuate throughout the day dependent on how fresh she is eg after sleep, how much energy she has eg after eating and drinking and many other variables which have an impact.

Her sensory processing issues mean that she cannot read her body’s signals, so she cannot identify when her muscles are tired or when she needs a break from physical activity.

Other sensory issues include (but are not limited to) identifying when she is thirsty, has had enough to eat, when she needs a nappy or what is in her nappy, noise sensitivity.

She needs a lot of prompting to identify how she is feeling and reminders to act on those feelings eg thirst, hunger, tiredness, toileting etc

TMH has also ‘unlearned’ things in the past so we are never complacent about her progression, she requires constant input to maintain her level of achievement.

***

This description is to aid understanding of some of the issues faced by TMH and are examples and guides and are not complete or concrete instructions.  Many specific issues will evolve and change over time but her core physical challenges remain a constant thread throughout everything she does.

As TMH develops, her strength and stamina will too (we hope!) and we are always challenging her to build on both of those through therapy, play and appropriate supports.

If you have any queries or would like further information please just ask!

Likewise any ideas/contributions re support for her are equally appreciated!”

(some details have been removed to protect privacy)

Hopefully this shows how far reaching but also how subtle some of her challenges are and therefore how difficult they are to advocate for.  Some are disguised in an environment like a nursery as ‘age/stage’ differences which means sometimes tailored support can be overlooked and the constant battle to ensure she has the supports she needs is ongoing and something all special needs parents are familiar with.    We have been lucky with a good nursery.

The huge change for TMH comes from the consistent and constant input we have given her since 6 months of age, even pre diagnosis.  With hard work and early intervention we have changed her prognosis and parts of the house looking like the OT’s therapy room is a small price to pay.

I’ll post separately another time about how these challenges impact on my physical condition, as physically supporting a child when I myself am physically impaired is difficult, sometimes dangerous (i have nearly dropped her) and quite frankly at times rather comical.  We have had to be quite creative with our solutions, think ‘bumping up the stairs backwards on my bottom with her on my knee whilst singing to make it fun’ – but boy does everything take so much longer when you have to adapt in such ways!