Friday, 25 June 2010


I was meant to be writing about our first forays into Equine Therapy for autism- suppress your snorts please!- but instead, the last twenty-four hours have been consumed by that most autistic of phenomenons: The Meltdown.

When I told my dear dad that Lyla had gone into meltdown, he wondered if it was something to do with the hot weather?

Er, no.

Meltdown is nothing to do with the sunshine or even volcanoes and is much much more than a tantrum.

Meltdown is where the person completely loses control of themselves and their temper for an extended period.

Once an autistic person is in meltdown, the situation is irretrievable, the meltdown will not stop until the person is ready to stop. Usually this takes between half and hour to several hours. And the person is at very high risk of having further meltdowns over the next twenty-four hours.

Last night Lyla's meltdown lasted for three and a half hours.

She completely trashed our home: every wardrobe ransacked and clothes ripped/ vintage posters ripped up, cod liver oil bottle smashed into the carpet, box of scissors thrown at us (me and her sister), sofa cut with scissors, plants ripped up, pots smashed, files thrown around the rooms, trampoline net cut with scissors, storage cupboard contents thrown stairs, sister's birthday present destroyed etc

When Lyla started to smash the patio doors I knew it was time to take her out to walk it off. I was worried about whether this was a good idea as she was screaming at the top of her voice and hitting/ scratching/ kicking and biting me. Her face and hair and clothes were covered in mud and grass (from when she was ripping up chunks of grass and pulling up plants) and her little face was stained with tears.

To put it mildly, we looked odd! As she walked down the road, she was swearing and screaming and kicking the walls and fences of every house we passed. At one point I had to restrain her from really hurting her sister and a man in a car stopped and started watching us, looking like he was on the verge of calling 999. He wasn't alone. I can understand it up to a point - I would probably be worried if I saw a woman wrestling with a child on the street (and another child running away, shouting 'I can't take it any more).  I'm normally pretty resilient,  but this did get to me as I just felt like we looked so scummy- how can you explain what's going on to somebody? I expect for most people it was the first time they'd ever seen a spectacle like it.

Unfortunately that wasn't the case for me and Mya, her sister.

After three hours, we were all exhausted and she finally calmed down.

This used to happen every evening for a year until she started taking her sleeping medication.

It was hell.

So why did she do it? Who knows? It all kicked off when she refused to take her medication. But obviously that wasn't really what it was about.

Lyla's been having some friendship trouble at school and I suspect that her frustration with this is what caused the meltdown.

She will tell us what's the matter when she can.

For now, I'll have to spend the weekend putting the house - and myself- back together and helping Lyla - and Mya - to stay calm.....

In other news, the Horse Therapy was a galloping success (sorry), more info to follow later.

Doodle by Me.

Thursday, 10 June 2010

What is Autism?

What is autism?

I wish I had a pithy answer I could dish up every time I get asked this question.

It's not that I don't know what it is, although sometimes the more I know, the harder it is to understand.

Technically, the definition is characterised as a 'triad of impairments': difficulties with social interaction, social communication and social imagination.

I remember hearing this at the first talk I went to on autism and saying, 'yes, but what does that MEAN?!'

To me, the three strands of autism seem remarkably similar and essentially they describe social difficulties.

Furthermore, there are other criteria which may now been included in the latest diagnostic criteria (the DSM V Manual of Psychiatry), most significantly the sensory processing difficulties that so many people living with autism experience.

But as a definition, saying someone has social difficulties trivialises what autism is- we all know plenty of people who lack social skills- this doesn't make them autistic.

Saying a person has social difficulties in no way helps you to explain to someone why the apparently normal-looking child in front of you has their fingers in their ears and is screaming at the top of their lungs or why they've just tried to run up an escalator backwards or why they've just stolen a bag of sugar, eaten half of it and hidden it under the sofa!

In essence, it is a very complex and subtle difference in the brain (as genetic research is now showing) which causes the person to perceive the world in a very different and often difficult way.

Added to that, every autistic person is different.

Recent gene research suggests that many genes cause autism and not every person is affected in exactly the same way- this is clearly why there is so much variation across the autistic spectrum.

When you've met one autistic person, you've just met ONE autistic person.

So, what do you know about autism?

What do you say when somebody asks you what autism is?

Painting by Lyla

Wednesday, 9 June 2010

Living with Autism Art Exhibition- Now On!

We held our private view on Sunday- it went really well, and here's what I wrote afterwards:

Sipping rosy wine we interrupt
hushed tapping of library computers
with murmured laughter, clinking glasses.
A year’s work culminates here.

Spotlit by dust flurries
streaming from skylights overhead
‘Autism’ and ‘Aspergers’ animate the airy walls
liberated by the act of speech.

Our small colourful canvases embellish
Snippets of conversation:
joky fragments- ‘meet my mad sister’
inspiring stories connect.

A millionaire's special school
in memory of her dead grandson.
A pale-eyed budding girl chants
Revolting Rhymes with absolute precision.

A young artist beams as children flutter by
dropping crisp crumbs on the carpet.
Later, passing through restless shops
I allow myself to daydream.

Exhibition continues at Putney Library until 19 June 2010.

Friday, 4 June 2010

Autism & Theme Parks

Happily, autism is something theme parks seem to do well (from my limited experience!)

Today we went to Legoland Windsor with some trepidation - theme parks really should be an autistic version of hell, offering the twin no-no's of massive sensory overload and unpredictability.

However, the combination of fantasy 'worlds' & 'lands' and the fun-factor makes them really appealing to autistic kids.

After visiting Disneyland Paris, Lyla declared that she wanted to live there 'forever and ever'.

Like many places, Legoland offer a free ticket for the carer of a disabled child, but additionally, they offer a special pass for disabled kids which allows them immediate access onto all the rides.

From the description on their website, it's very clear that Legoland's policy relates specifically to autism and related conditions and reading this was what encouraged us to go:

LEGOLAND Windsor’s exit pass policy has been designed to assist Guests’ who do not understand the concept of queuing, have difficulties with everyday social interaction, have a limited capacity to follow instruction or to understand others emotional feelings or expressions, and may become agitated or distressed having to wait for periods of time. The scheme is in place to assist families to enjoy their day in the maximum way and to relieve pressure on the family.

Without this facility there is absolutely no way we would even have attempted Legoland.

As it was, when we had to queue in a boat to get off a ride as one of the boats had broken down, I had to physically restrain Lyla from jumping out of the boat and into the lake as she was 'bored, I'm getting out now'!

About halfway through the day, Lyla clocked that we were able to jump all the queues and asked why- when I explained, she said, 'Oh, because I'm a VIP'.

Yes Lyla, you are.

Some tips for making Legoland easy:
1. In school holidays, arrive at least half an hour before the park opens, otherwise you will queue in traffic for ages and arrive already stressed out!
2. The Exit pass is a must for autistic kids, it makes it do-able
3. Bring your own food- the food in Legoland is good, but very expensive and the sheer variety will upset and confuse your autistic child
4. Leave at least an hour before closing time- you will probably have had enough by then anyway as you will have been to choose which rides you wanted to go on without haveing to queue and you don't want your day to be ruined by a huge queue to get out of the carpark
5. Use the Lost Adult stickers (containing contact info if the child gets lost), if only for your peace of mind and watch your autistic ones like hawks!!

Photo by Me.

Tuesday, 1 June 2010

The Truth About Autism

Inspired by my friend and fellow autism-mum, Amelia Critchlow's post of the same title, I've finally got up the courage to tell it like it really is.

Regular readers will know that I like to call it honestly anyway, but recently autism and everything that goes with it has been threatening to engulf me- it won't - but here's why.

The odd looks and comments we get when we go out- especially if Lyla lashes out - I can honestly say don't bother me. I've developed an incredibly thick skin and ability to stare very hard at nosy people.

The stuff that's more challenging is what goes on behind closed doors.

Firstly the emotional ache, which is always there. I try to focus on the things Lyla CAN do rather than what she can't. And when I do this, I am often surprised. Last week she appeared in a fashion show at school and managed to walk down the catwalk in a cast of over 100. Go Lyla! Also, she's the only child in the school to have so little awareness of social graces that when asked in her homework what she thought of the book, just writes 'Boring' and when asked who she thought would like it, writes the name of the author! Or, in the supermarket yesterday shouts out 'If this aisle was full of Paris cheese, it would turn my oxygen to vomit'!!!!

Amidst all these successes and quirkiness, there has also been the challenge of her rampaging through the family home. This weekend she washed all the windows with suntan cream, smashed a vintage chandelier, hid my husband's guitar tuner (the replacement for one she had hidden previously) cut up the sofa and autographed it in violet permanent marker, emptied the whole contents of the freezer out and left them to melt on the kitchen floor, hidden a pile of peas and apples under the sofa, poured fizzy water into toilet wipes box, flooded the bathroom (I'm crossing my fingers for the Victorian cornicing, its holding up so far, I hope it survives, albeit, now dyed a lovely shade of parchment). She also left her favourite outfit in the garden and the foxes got it, keyed cross shapes into my car (I now look like a weird Satanist/ Christian Evangelist driving along, as if I don't have enough to worry about), refusing to wear her seatbelt (and I mean physically REFUSING) and ricocheting around the car.

This is all I can remember for now, but it's enough to be going on with. Don't get me wrong, I don't care about the destruction of my property. Well, I do, but I'm past caring. But I physically can't keep up with clearing up after every incident and do everything else I need to aswell.

And everything else, in autism terms doesn't just mean the other domestic stuff. It means the whole raft of 'strategies' and 'treatments' and 'therapies' that I have to try and implement in order to try and help improve the outcome for Lyla.

I spend a lot of the week at appointments with various professionals, training sessions, reading up and preparing things (visual timetables etc) for Lyla. I sometimes feel like I have a Phd in autism. And still I often feel it's as elusive and unknowable as ever.

To demonstrate, I'll list a few of the therapies that I have either considered or actively DO with Lyla, ranging from the essential to the completely wacky:

Occupational Therapy- proprioceptive training exercises, 20 minutes daily
The Listening Programme- sensory integration therapy, 15 minutes daily
Speech Therapy- ongoing programme of how I speak to Lyla and play games with her to encourage social interaction
Drug Therapy- Melatonin prescribed for sleep by the paediatrician
Nutritional- Fish oils and certain vitamins may help autism
Behavioural Strategies- constantly
Intensive Interaction Therapy
Applied Behavioural Analysis
Son Rise Programme
Biomedical Intervention
Berard Auditory Training
Music Therapy
Gut Analysis (!)
Hyperbaric Oxygen Therapy
Gluten-Free/ Casein-Free Diets
Social Stories
Visual Aids & Timetables
Play Therapy
Verbal Behaviour
Scotson Method

Lyla is being assessed for ADHD at the moment, so that's another extra layer to deal with.

She's also pretty behind at school because she finds it really hard to concentrate - I try and help her to catch up, but she usually refuses to read or write for me. Everything comes second to her obsession with television, which she watches with the sound cranked up, sat right in front of it, bouncing on a FitBall. It takes over the living room and it's just not worth the fight most times to get her to put it on something I like or even better, to turn it off.

As far as these therapies go, there's always more you could do and there's always the knawing doubt that unless you're flat out doing everything you can- which you can see from the list above would probably take several lifetimes- then you're not doing enough. It feels like a bottomless pit. But I want to do as much as I can and no matter how many times people say that you can only do what you can, I never feel like I'm doing enough, I should/ could be doing more. I want to give her the best chance.

The main point with all these therapies is that you have to do it all yourself. For example, the government will pay for you to have an initial assessment with an Occupational Therapist, but not the therapy itself, so you have to carry out the therapy yourself. Some of the other therapies are only available privately and inevitably some of the provider's try and cash in on people's desperation. I have a friend who has bankrupted herself by paying more than £50,000 on therapies for her son over the last two years.

Doing nothing isn't an alternative for most families, the autistic behaviour needs to be strategically managed, otherwise you end up with having to call the police because you have a strapping 16 year old child who has just beaten you up. Of course, you may implement the behaviour strategies and still have this happen. But you have to try.

So far this morning, she has punched me, screamed at me and lashed out at her sister- this is all part of her impulsive behaviour and her difficulty with managing strong emotions. Nevertheless, these actions leave more than a physical scar.

Additionally, we popped into the supermarket for five ingredients to bake a cake with.....she then got told off by a huge pair of security guards for touching the travelator. I explained that she had autism, because I felt I had no choice. She got really upset because I had told the man she had autism and because she doesn't understand being told off. She cried all the way home and said never wants to go back there again. I felt I hadn't handled it as well as I should, I wish people were more aware of autism- our lives would be just a little easier. I contacted Sainsbury's and asked what their policy was on making the store accessible to people with hidden disabilities like autism. They were very helpful and said they would send a note to all the stores to make them aware of the issue. I've made a decision that when I can, I'll raise the issue rather than suffer in silence as the only people that hurts is us. I told Lyla about the phone call and she said thankyou and then- 'well, the man was an idiot mum, he didn't know anything about autism, he should be sacked'- Go Lyla!!!

It's hard not to feel that all this is more than a full-time job. It is several full-time jobs. Certainly, most nights, I put them to bed feeling absolutely shell-shocked. I lie there and stare, poleaxed, so tired I could vomit, a deadweight, oblivious to all sound, just breathing. And before she started taking sleep medication, this would be just the beginning of an evening full of hyperactivity and violent behaviour.

Then I get up and start all over again.

This is extreme parenting, although nowhere near as severe as what some other families living with the condition have to deal with. I know of mothers who survive on 3 hours sleep every night (from 10pm- 1am every day) because they have a child who can't sleep, even on medication.

I'm starting to get several minor stress-related health complaints like stomach ulcers. I sometimes wonder if I will last the course as I don't see how this level of stress is sustainable in the long run. As families we need help. I need help - a fairy godmother or failing that somebody, anybody is welcome! People wrongly assume there must be help out there for us. There isn't. We have to help ourselves. The story of one of the parents on the TV programme Young Autistic and Stagestruck comes to mind. Her son was rampaging around the house, so she took him out in the car, where he attacked her. She came home and called emergency services and said somebody had to help her or she would take herself and her son and jump off a bridge. This is heartbreakingly wrong. We should and could be doing more, so much more, for families living with autism.

So this is the reason for our Living with Autism artshow- to allow the participants to share something important to them and the raise awareness of our lives.

We exist.
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