Beautiful Imagination.

I'm about to bust open one of the many myths about autism that drive me crazy! One of the misconceptions that I have personally seen 'professionals' get hung up on. Imagination! Oh yes people with autism can have imagination and guess what? They can play imaginatively too! I have read so many times in so many different places that those on the spectrum lack social imagination, many times it is clear others have totally misread or misunderstood what this means.  Social imagination is far more about being able predict the actions of others. However time and time again I have heard 'Well S seems to be able to play imaginatively'. It makes me want to ask 'So? What is your point? Would you like me to tell you where she has picked up her story lines from? Which TV show or film that is from? Would you like to try change a character in the game she is playing see how "imaginative" her game is then?' It was a huge sticking point for both S's school and her Ed Psych and I lost count of how many times I tried to explain she was mostly copying TV shows or others games and felt I was not listened to. Luckily we found someone who could see past the surface of S's play to what lay underneath.

This is an example of how wonderful S's imagination is and  how I have leaned to enter her bubble where others can't. Firstly I have had to learn a lot about dinosaurs!
This is a Gallimimus:

On a recent trip to the park S decided she was going to spend the whole trip being one. This meant that she ran around stating 'I'm a gallimimus. I'm an omnivore that means I eat meat AND leaves.' She would have happily run around pretending to chase other dinosaurs and eat leaves from the trees, with her body in a similar stance to the picture above, holding the correct amount of fingers out. Sometimes she would run past telling me again that she was a gallimimus who happens to be an omnivore, however I wanted to play. I wanted to join in and I knew exactly how. I walked close to where S was playing with E (my 2 year old) at my heels and loudly announced 'ARGH quick E! There is a gallimimus on the loose! Run away!' Her head flicked around and she paused for a moment and watched as I scooped up her sister and ran away, then 'RARGH I'm an omnivore so I eat leaves AND meat and you are meat.' I had her! she was chasing me she was playing with me. We played this game for some time, we even managed to capture the rouge dinosaur! Once I tired of running S went off and played alone again happily in her little dinosaur bliss. There was another child in the park at this point who attempted to get S to play but she was not interested in being chased by a gallimimus and after answering a few questions very briefly (the girl knew S from school) S would again tell her 'I am a gallimimus. I'm an omnivore, that means I eat meat and leaves. RARGH.' The girl didn't realise that this meant S wanted to chase her and just looked on confused when S insisted she was off to eat some grass. 

It was a bit of a mixed trip I was given a little insight into how S interacts with other children and how her lack of social imagination made it difficult for her to realise the other little girl had no interest playing dinosaurs nor did she understand the game S was playing and S just didn't pick up on the subtle hints to play something else or talk about school (not something I wanted her to discuss with this particular child anyway). Sometimes it does make me feel sad to see S not having the same social development as children her age but S did not come away feeling sad as we had a wonderful time. Although she didn't tell me this I know she did too and am expecting the gallimimus to show up again next time we visit the park. 

When the Future Seems Terrifying.

I have always been so proud of how intelligent S is. She is one of those children that once you engage with you can see she has the brains to go far. What happens though when something stands in the way of that potential? This is something that is becoming more and more of and ongoing worry for me. S is 5 years old she is in her second year in school. S was following her classmates progress wonderfully and even showing that beautiful intelligence  Just recently though something has stopped that progress. S appears to have just lost the ability to learn.  She clearly has fine motor difficulties and the ever increasing amount of written work is no doubt a great cause for anxiety but this is just one thing among many others, some of which even I as her mother do not fully understand.
S has always been a perfectionist. If she tries something and it isn't perfect she cannot seem to grasp that it is ok. It's not ok in her world, if she didn't do it right she has failed! That is it, a simple right or wrong. S hates to be wrong so increasingly she refuses to try. She is so scared of not meeting her own high standards that she just cannot try. This is so frustrating to everyone around her. This is also where S's intelligence becomes her worst enemy. S at 5 has become the queen of avoidance. She has one strategy that seems to send everyone reeling and leaves a huge group of adults feeling helpless and very worried for what the future holds, if they cannot find away around it. What S does is she simply shuts down. What others may see is a very different picture, it is what is making the fight for diagnosis so much harder. Before I describe what happens I want to say this is a very hard subject to write about because as a mother this is the time I feel completely helpless. I feel helpless because despite knowing that my child is in fight or flight mode (that adrenaline feeling you may get when faced with real danger), despite knowing my child's behaviour is screaming 'I cannot take any more', despite knowing this is nobodies fault and blame and judgement will only worsen things I cannot help but live the negatives. My child is out of control, my child may hurt someone, my child may lose more of her education, my child may stop learning all together, my child is suffering and I do not know how to help her. I am failing my child.

Screaming, repetitive noises, humming, growling, coughing, words that make no sense repeated again and again, giggling, 'I won't do it' 'NO' 'Shut up'. These are just some of the things you may hear. If you were to look you would see is a flash of blonde hair running back and forth, spinning around and around, people and things being crashed into, things being thrown, knocked or pulled down. You may see one or two maybe even 3 people trying to contain this whirlwind. If you watch them closely you will not see anger you will see confusion in the looks passed between them, begging each other for an answer. You may hear the odd few words but they know they cannot bargain because they will not be heard. Once that chaos stops it just stops. There is no slowing down it just stops. All is calm and you may wonder what stopped it, as too will those who were trying to contain it. What you just witnessed is my daughter shutting down. Her ability to function was totally lost, and that is exactly how she copes with the stress of things she cannot control.
That is not a 'naughty girl'. She is not wanting something in particular quite the contrary she just needed something to stop.

Recently it also become apparent S suffers from her senses not working like most and not just the 5 you learn about at school. Her proprioceptive system is not working correctly. You may not have heard that word before so I will explain briefly, a better explanation can be found here, this is the sense of where your body is in relation to the rest of the world. Think of when the dentist numbs your mouth and you poke and prod it because the sensation of numbness really bothers you, this is what S's body is going through a lot of the time. This is why she can't sit still, why she touches things, bounces and spins. She needs to feel her body is there.
Add all of this into the pot and you are left with a child so overwhelmed it is no surprise she becomes this whirlwind.

All of this and still everyone battles to understand her and we struggle to get definitive answers. Answers that could be our passport to help and a little more understanding. While I battle that helpless feeling I have to constantly tell myself that I cannot get bogged down with a multitude of worries. I cannot look to the future with despair tinted glasses, because if I do I will lose the fight. I have to take each day as it comes. Celebrate each little victory and be thankful I got through another day. I shall tonight for the first time go to sleep proud of how strong I have become and how much I have learned. Tell myself I won another battle and not allow myself to be afraid of tomorrow.

Please let her be.

My daughter doesn’t show her emotions the same as most. When she is happy she screams, when she is mad she screams, when she is excited she screams, when she is anxious she screams,when she is angry she screams and when she is sad or hurting she screams. I am slowly learning to differentiate her screams and react as best I can. No my child is not a baby she is a beautiful, clever, loveable, funny, complex 5 year old girl.

Don’t tut when I let her shriek because she is happy. Her little head is full of so much anxiety and confusion that I let her grasp happiness and feel it as intensely as possible. She does many things to soothe herself, to intensify that happy feeling, to share it with me and others that you may find inappropriate. She loves to spin herself around and around, she loves to flap her hands or twist her wrists, she loves to bump into things (including people), she loves to stoke or lick things, she loves to bury herself under piles of teddies, she loves to talk, hum, sing and giggle.

Don’t shake your head when she shouts at me. I know she looks disrespectful but small noises you may not hear can hurt her head, smells you didn’t smell can make her feel unwell and sunshine can make her eyes sore. If you were made to listen to loud music that you despised while someone shone a torch in your eyes and waved a dirty nappy under your nose how long would you keep your cool?
She cannot always control her urge to do these things and sometimes I even encourage it. You see my daughter’s brain is not wired like everyone else. There are many things children her age instinctively know, that my daughter doesn’t she has to learn them like one might learn maths. When you frown she is fascinated by the wrinkles in your forehead, she doesn’t know they mean she has displeased you, when you smile she doesn’t always see it, so may not smile back, when you step back she may move closer, she doesn’t realise she is in your space. What she has learnt already is she is not like everyone else. She knows others can handle new things better than her, she knows others often see her as a nuisance and if only you knew what that has done to her fragile little heart.
The tears you would shed if you heard the child you adore tell you ‘this world is too hard I don’t want to be in it.’ ‘I wish I was like the others.’ As a human I ask for you to find somewhere in your heart to please just let her be. Don’t tut, don’t frown, don’t shake your head. Her world is hard enough don’t judge what you don’t fully understand, give my child a chance to enjoy her life.

Trundling along

So since the ADOS test I have been finding it very difficult to get my head around what is next. We were very much left in limbo and it appears all support has just stopped. OT stopped seeing S end of term and no indication of if she plans to see S again or review her case at any time. No planned meetings/ assessments with Paed or EP have appeared and I believe S has been filed under 'done all we can be bothered to do for her so we'll just trail them along in our system a bit longer, until the parents get bored and drop it.' I have been feeling very glum about it all and mulled about knowing I will have to fight some how but totally unsure on how or where to even start. I even started to doubt S was ASD.

I shut off from the world and became encased in my own despair at what was happening. I suddenly didn't know how act around S again and got strict reprimanding her for things an NT child would know not to do and right on cue she rebelled and proved I was being silly to doubt my mothers instinct. In the week after the ADOS test I saw the most violent behaviour I have ever seen from her. The slightest knock or trip resulted in S screaming loudly, mouth wide she suddenly seemed to forget how to breathe and in a complete act of fear she would run to me throwing herself face first into my chest . On one occasion she scaled the sofa to get to me and was intercepted by hubby, who in the chaos received a set of teeth into his shoulder., then S threw her head back narrowly missing her little sister and head-butted him. I too got a set of teeth in my skin and many head-butts that week. It was awful to watch her this way and I tried desperately to drag myself out of this state of self pity and get on with helping my daughter, cabin fever wasn't helping! We went to visit my sister and S seemed so much happier to be out of the house. That day the over stimulation of two toddlers and the excitement of seeing her two aunts got S to a point where she was very hyper and needed to be calmed. Why I didn't just take her upstairs at the first signs of over stimulation I will never know, but after being kicked and hit over and over I scooped her up put her in her cousins room and gave her every soft toy in sight. She soon calmed down and even asked to stay there a while longer.

Easter sunday the rain poured and we decided a trip to the country park was no longer an option I dreaded telling S but had pre-warned her that we may not go if it rained. She sat sadly on the sofa totally uninterested I then clocked a leaflet for a steam railway nearby and after showing S the website and lots of youtube videos we were soon on are way for a ride on a steam engine. That grey day turned the holiday around and fun was had by all.

Tuesday I took S to a football course put on by surestart. We were going to go as a family but hubby was not so keen so I decided S would benefit more from it just me and her going. The group was small so it was ideal for S The instructor was really good.  He did not push her too much and gave a great amount of praise when she did something. S really struggles with her co-ordination and motor skills and often refuses to try new things for fear of being no good at it. She joined in happily for a good 15-20 mins. After this she had started to feel quite challenged by the activities and was no longer taking the gentle persuasion to carry on trying. I could see the stress building so asked if she would like to get a drink and sit and watch for a while. we sat and watched the other two children and the instructor did a few times ask if S wanted to try but got a firm NO. Towards the end S was becoming a little frustrated with herself and wanted to score a goal. The instructor turned towards her and asked if she would like to have a few shots at the goal and try to get a smiley stamp. After being told she could stand near the goal and that it was just her and the goal (no other children) she was encouraged to have a go. I felt a huge swell of pride for her as she kicked the ball into a net from about a metre away. We had a small wobble when she missed but instructor quickly got her back on track. She got her stamp and I watched her face light up when he put the backs of her hands together, said 'abracadabra' then pulled her and hands apart to revel she now magically had 2 happy stamps!

The rest of the week rattled on and we even managed a food shop as a whole family. It was not totally stress free but S managed pretty well thanks to being slim enough to still sit in the trolley (despite some dirty looks for doing so). Friday morning I left for the weekend and S even came to the platform to see me off she even coped well with the noise from the trains with Mummy cuddles and cupping her hands over her ears...maybe there is hope that one day she can get to this point with hand dryers. The break was nice and it sounds like S had a lovely time with her Daddy but I did miss her an awful lot.


I'm now feeling a little more at ease with what is going on and doing as much research as I can. I am am now certain S has Aspergers (AS) which is harder to diagnose as many with the syndrome can appear so 'normal'. It is also far harder to diagnose in girls as it presents itself so different. Many girls fly under the radar until teen years, well into their adult years and in many cases go completely undiagnosed. Statistics related to diagnosis show the ratio of boy to girls with AS are 10:1 yet researchers have found these to be more likely 4:1 due to under-diagnosis in girls. Dr Tony Attwood even believes the ratio is more like 2:1 (see video linked at the end of blog). Armed with this knowledge we now understand it is time to roll up our sleeves get ready to fight for the diagnosis that will give us extra help for S, will mean we can stop having to analyse our daughter all the time and to give us an explanation the next time S queries why she is different. I'll keep researching and am eagerly awaiting the delivery of 'Aspergirls; Empowering Females with Aspergers Syndrome' hoping it will be as good a read as reviews say.

It is sad to read that so many families get fobbed off by professionals for years but I am determined this is NOT happening not to MY child we will not sit at home and quietly await another appointment where we are talked down to and made to feel like we don't know our own daughter. We have already sent the first, in no doubt a long list of letters, to insist our Paed is changed and we get a referral to CAMHS.

S is back at school this week and seems really quite content. When I picked her up wednesday teacher told me her coat was soaked as she had stood under a dripping drain pipe. When I asked why I got 'I was having an outside shower.' On seeing a sad face in her kind-hands book with the words 'throwing sand' I  decided to try explain, yet again, why she shouldn't.. I was met with 'but it is all sparkly'...'yes but it could get in someone's eyes and hurt them. You could try running it through your hands like this.' ...'but it's rubbish that way, it doesn't look like fireworks.' How do you argue with that logic? I just grinned to myself and ended the conversation with 'I know it looks good honey but you really can't do it in case it hurts someone. Look at that flower can you remember it's name?'

Dr Tony Attwood on aspergers in girls.

10/03/12- Very public meltdown,

I went to a large park today and S wanted to play on a large climbing frame with slides on it. She cannot get up it alone so has to be helped. She knows people should wait their turn so was getting very flustered because other children were impatiently pushing past her. I helped her up while she loudly announced 'He cannot come up yet mummy, he has to wait.' She headed straight towards the way for the highest slides. I shouted up 'Try these slides first sweetheart because you might get stuck on that bit.' It fell on deaf ears. She tried to climb but due to her poor coordination and anxiety she was stuck and scared to move up or down. She started to shout and cry and when another child went past she hit out at them, not because she is naughty and wanted to hurt them but because her stress levels were so high she had lost all self control and could not longer cope with her surroundings. I had to leave her sister in her pram and climb up to get her.
You might think Mummy to the rescue problem solved. Right? Wrong! When in 'meltdown' she is very contrary, she did not want my help but couldn't do it alone! I was faced with trying to reason with a child who was on a ledge screaming and crying and repeating 'I can't get up there mummy' over and over again a child I knew would not happily fall into mummy's arms relieved to be rescued but would go rigid and kick and fight if touched. Unfortunately two children seeing a gap squeezed through it. This totally broke the 'wait your turn' rule we have had to embed into her and caused her to start lashing out! I had no choice but to lift her down knowing it would enrage her. Let me tell you now a 4 year old in meltdown is hard to carry on level ground let alone while trying to navigate a climbing frame. I had to move her for her own and other children's safety!
Once on solid ground I have to leave her to cry shout and scream until she had recollected herself, before I could even attempt to talk to her. I could see the glares and the head shakes, I could hear the tuts! I saw the look of horror on their faces when the mummy did not tell her child off for her 'naughty' behaviour but instead passed (this child clearly too old for preschool toys) an iggle piggle soft toy and encouraged her to rub it against her face to calm her down!

If only they went away and read about ASD instead of thinking how much of a better parent than me they are!