Monday, 20 December 2010

Merry Newtonmas Everyone

The Autism Act 2009 was the first ever disability-specific law in England. This Act did two main things.
First to put a duty on the Government to produce a strategy for adults with autism, which was published on 2nd March 2010
That's C top right
The Government also had to produce statutory guidance for local councils and local health bodies on implementing the adult autism strategy which was published on December 17th 2010
Local councils and local health bodies now have a legal duty to implement it. (What there is of it)
Lack of money will not necessarily be a strong reason not to.
It covers training for staff, identification and diagnosis of adults, planning of services, including transition from child to adult services and local leadership.

So still rather woolly and open to interpretation. But this has made legal history and to my mind should open a few doors to raising much needed awareness. It is a start. Something we can positively build on e.g we need Autism Partnership Boards in all areas.

C in the mean time has been busy in Parliament!!’s a photo of a photo of C and I used by Viv Cooper of the Challenging Behaviour Foundation in a recent joint APPG on autism and learning disability in the House of Commons to which I was invited. Viv talked about their new Charter 

So some possible hope for raising autism awareness for the future in one hand and on the other real fear as disabled people discuss suicide because of the proposed cuts to our Welnotfare system. Ministers need a Newton moment to remind them of past promises made and give them some understanding into the complex challenges that people have on a day to day basis for the simplest of things let alone trying to pay for basic needs such as heating, eating, getting around and picking up spoons etc 

"Dire consequences" for disabled people. Neil Coyle, Director of Policy at Disability Alliance
"Devastating chain reaction" for people with autism. Mark Lever, Chief Executive NAS
"Many people will literally become prisoners in their own homes." Richard Hawkes CE Scope
And we have yet to hear the fate of carers.

Some sites to check out
to name but a few.
Am happy to add more.

Tuesday, 30 November 2010



I was recently told by a manager of a residential home (not C’s) that because I have organised a Christmas lunch for the parents of C’s home that there must be a need in me to fix people. Other parents have too many issues and I shouldn’t take them on (I was only suggesting lunch!) That there is something missing in me and that I should walk away leaving C to ‘highly trained’ staff and get on with my life. ‘That’ he said would be the best thing I can do for C. Stop being a martyr. Apparently I have a build up of years of grief, guilt and denial. I have co dependency issues, control issues and am over protective (maybe some parents have good reason) I should accept that this is ‘it’ for C and not to want any more for him. Staff are not there to befriend ‘clients’ or parents. It is a job. It is not about family. If your son was normal and went to university you wouldn’t know what he was getting up to. Stop trying to save the world. Stop interfering.

All because I mentioned having an Xmas lunch for parents. I'm finding the difference in attitude and expectation of some staff from the world of education to the adult world is huge. There should be a transition plan for us parents!

How can you accept and support our adults if you don’t accept and welcome their family?
Things are changing and with the Internet and social networking these days parents are all in touch with each other – and with professionals. Some of us are professionals. We have access to the latest research. Some of us go on courses and attend conferences. We read books and papers. We write books and papers! Parents can be a good resource. We are the experts. Many of us know the rules, regulations and good practice guides, we rewrite them! Some parents sit on Boards and committees and change policies. We are political. We take part in consultations. We campaign. We run Charities. We got a mention in the Equality Act! Things are supposed to be transparent. We do want more. And as Kev said – we want it for everyone.

We want to work together in partnership.

So yes I do have a need to fix!

What out of date stereotype would you like to change?

I know not all staff think like this and there are many excellent people out there who work really hard with us parents and do want to update the system and the attitudes.

Thursday, 18 November 2010

Autistic with spoons

Autistic with spoons? Autism and spoons? Here’s my attempt at a variation on the spoon theory.

We all have spoons. There are no stereotypes for spoons. Everyone’s spoons are different, everyone has a different numbers of spoons which fluxuate. Everyone uses their spoons in different ways. And maybe your spoons don’t even look like spoons!

I think I know my own spoons quite well, I have learnt to recognise (and respect) them as I have become older. Some spoons I can hide. C seems to know when I have lost a few spoons!

And C’s spoons from motherly intuition and my perception of them over many years I have some sort of idea. But I have no idea how many C has at any one time. He has ones for many more things than I do - noise, light, colour, smell, sharing personal space, things around him, movements, processing, feelings, thoughts, communicating, bodily functions, positions, health, head banging, keeping clothes on, standing up, rocking, flicking, eye poking - and many many others I just have no clue to. Nor no clue as to how they really affect him. Before during and after juggling.

Some days C is better at juggling his spoons than others.

Some days he may have woken up with fewer or more spoons than usual?

Some days some spoons maybe bigger than shovels and C is intensely aware of spoons that he can usually ignore.

Social interactions for C uses up lots of spoons so he very rarely does it and then only if he has spoons in abundance. Making him ‘appear’ severely socially isolated.

C’s spoons do not conform to many NT spoon rules. C’s spoons can be extreme - obvious or invisible. C’s spoons like to keep me on my toes :)

Some days C drops his spoons one by one – if I have been watching closely I can see this happening and sometimes I can distract him, divert him or remove him where possible before he loses too many.

We have both learnt different tactics for clutching on to the few remaining spoons. C learnt to put his fingers in his ears, to hum, to rock, to focus on an object (used to be a chopstick now it’s his thumb nail).

I have learnt where to position him, distract him with my predictable movements or by mirroring him, using behaviours he recognises, or maybe playful ‘ritualised exchanges’ like I kiss him on the nose with my finger. This seems to sometimes ground him (if he hasn’t lost too many spoons by then) or my making happy sounds that he makes. Looking deep in his eyes - Positive and reassuring. Etc

But if C didn’t drop them one by one, if all his spoons just spectacularly crashed and there is nothing he or I can do and he over loads, melts down, fragments – whatever you like to call it. All I can do to help him is to get him to a safe quiet place to recharge/process/pick up some of his spoons.

And I do the same as I also will have lost a few by then.

On reflection there is always something to learn, something I may have missed. And so the next time I try something slightly different (yet familiar and recognisable). We have built on this and evolved our routines opening up C’s world. I learnt to read the function of some of C’s spoons by being sensitive, mindful, watching and listening. It’s been hard work and some things have taken years - but C’s arsenal of spoons that he can juggle is growing and changing all the time - it has been so worth it and now we can go just about anywhere. And try anything.

We have a connection. He trusts me even when I get it wrong sometimes and drop the odd spoon.

Saturday, 6 November 2010

Cuts and Campaigning

Dear Bendy Girl

I recently went to a fascinating talk given by Neil Coyle Director of Policy of the Disability Alliance (DA). Their aim is to break the link between poverty and disability.

Some of the talk was around the background of where we are now and how the Dynamic Benefits led to the creation in Government of the 21st Century Welfare and their principles.

As you know the ‘potential improvements’ to our benefit system include a Universal Credit – a one size fits all model. A savings generator rather than to transform people’s lives and tackle poverty.

No mention of support, genuine job opportunities, supporting employers, sustainable or even enough work etc etc (Statistics can be found here).

We are all in this together! Disabled people did not start in an equal position. Disabled people are twice as likely to live in poverty already.

The DA need real people to speak up before the total effect of changes has such a devastating impact – case studies are essential.
So Bendy Girl I sent Neil Coyle your The Broken of Britain (A collection of real life stories) website which he said was very useful and he would be happy to add something to the site when they launch the research on DLA. (Dont worry i will remind him!)
So if we could urge people to send you their personal stories it could help make a difference.

Neil also urged that we all of course work with local councillors and MPs to highlight the impact of the proposals.

ACT NOW has put together an Impact Assessment report regarding the proposed cuts in public spending on people with Autism.

Disability Now warns of hard times ahead.

And the Ouch message boards are bursting!

Draft letter you can adapt and send to your MP

  I recently went on a one day Campaigning course – here is a brief summary of my notes which may help anyone wanting to take any of these issues further.

Good campaigns run by local people can make make a difference.

You need to ensure your aims and objectives are clear and concise.
SMART - Specific, Measurable, Achievable, Realistic and Time-bound

Gather accurate information and evidence to support your case.
Examples include personal stories, questionnaires and surveys, good practice examples and relevant local or national statistics.

Timing is important, find out when to start influencing the decision makers.

Lobbying your local council. You can influence your council in a number of ways:
Contact your local Councillor. Use the Opposition. Use the Local Paper. Submit a Petition: Lobby the Leader, Executive and Cabinet, and use your local MP Locally and Nationally.

Use local media. When it works well, local media can be extremely useful in advertising your campaign to a wider audience. It can influence key decisions made by a range of people including, local councillors, MPs, business people and even help change public opinion.
It’s all in the first sentence – you need to sum up as much of your story in one sentence as possible and answer the questions: who, what, when, where, why and how. This is a great way to check if your story is news. If you can't sum it up concisely in a few lines of text, then perhaps it's not a news story.

Have a good sound bite. You can either put this in a quote in a press release. It can capture the imagination and get you more coverage and impact.

Letters to the editor. The letters to the editor pages are some of the best read pages in local papers. If you do send a letter, brief friends and colleagues so that when your letter is printed, they can respond and keep the story going. If the newspaper receives a number of letters on one issue, then it might prompt them to do a news item or a feature.
Phone-ins.These are the radio equivalent of letters to the editor.

Campaign stunts are effective way of getting media and public attention.
C and i will have to think of something! Any ideas?!
Hope all is going well Bendy Girl
Love Casdok xx

Sunday, 10 October 2010


C turned 22 recently. C in the same week was taken to Diddlyland by staff.
What image does this project to the public - to C?
That it’s ok to treat adults as kids?
Was there any thought or consideration for C's intrinsic value as an adult, as an individual?

Was there respect for C as a person first and not just as a set of behaviours. C’s Autism/learning disability does not alter his essential worth.

I fought for years for C to have the best education, support, therapies etc so he could achieve social inclusion in the adult world. Not this. Again. Contradicts everything I believe in, fought for, raised awareness for and worked towards with C.

C may very well have enjoyed this as he likes trains. But it doesn’t take much to be creative and find something more appropriate rather than maybe assuming C doesn’t know any better as he doesn’t speak and you can’t measure his IQ. The noises he makes may sound like babble but this does not mean you should babyfy him as he is communicating with himself and his environment and gives value to who C is.

We should be enriching and opening up Cs world, expanding his experience supporting him to grow and not stagnating him in perpetual childhood.

How can C grow in self confidence if low expectations are projected on to him?

To me this is staff demonstrating ‘Theory of mind.’ They are not understanding or relating to C. Imposing what they think from what they have always done.

A photo paints a thousand words. What does it say to you?
Some comments from various walks of my life:

As a parent of a young autistic child I find this frightening for my son’s future.

You must be livid. If anyone did that to my child I would hang draw and quarter them.

You should be grateful for what you get and not rock the boat. The staff are doing their best.

My daughter still likes to play with childish toys. I am weaning her off these to more sensory adult things. There are plenty about these days. But that is behind closed doors. I feel very strongly what we need to say to the public and staff.

In this day and age there is simply NO EXCUSE for reinforcing the public's stereotypical view of autistic people as lesser citizens in this way, and whichever so-called 'carers' were involved in this fiasco are fortunate they weren't exposing MY son to public ridicule like this.

As a refrigerator mum - you shouldnt care!!!

Where is the dignity and respect that our people with LD deserve? They are not adult children...this type of activity is taking us back to the dark days of Institutional care.... and that is part of the problem..... we don't want 'Care'...  we want  acceptance  and meaningful  lives for our people. They need respect and support to enable them not childish activities that only give a picture of pity to anyone observing them in this type of environment. They are PEOPLE FIRST and last.... the staff need more  training...     this is totally unacceptable..... C is an Adult.....  his rights to be treated as such have been negligent.  The staff should be ashamed of themselves!

I thought the CQC changed its regs to include dignity. Are the staff not trained?

Sorry I had to laugh. From Normalization to Personalization and Right to control to Diddlyland!!

Education staff and care staff have a very different mindset. Staff are the only barriers.

Illustrates well the Social Model of disability.

I am a young man with autism and I felt really disgusted when I saw the pictures of C on the Diddly Land train. He is obviously much too old to be on a ride like that as it is intended for young children. I felt very sorry for him as he was most probably being laughed at. He has the same human rights as anybody else and nobody else would be humiliated like this at the age of 22. I hope that me writing this will make sure this doesn't happen to someone else.

This is baby sitting.

Monday, 13 September 2010

Sleep Deprivation

Sleep deprivation has been used in wars and terrorism as a form of torture to force victims to disclose information. Sleep is a stronger basic need than food and water. Simply, the human body cannot do without sleep.

Unless you are C.

C’s life is an endless wave of transformation and I never know what’s coming next.

C has never been a long sleeper. 4 hours if I am lucky. But for nearly 6 months now when home he has not been sleeping AT ALL

Apparently there is a connection between lack of sleep and the following characteristics in some autistic people. But I think this list explains me and my sleep deprivation! I can’t see any difference in C.

• aggression
• depression
• hyperactivity
• increased behavioural problems
• irritability
• poor learning and cognitive performance

I feel my brain has been kidnapped. I feel desperately tired, lonely and often totally emotionally overwhelmed, a loss of identity as he uses me as an object.
Not knowing which level of consciousness or planet I am on especially around the 3am void on the 3rd night
Like the universe I need some Duct tape to hold me together.

So for understanding (and C enlightenment!) I research. But sometimes I have to accept I won’t always find answers.
Here are some of the things I have looked into over the years and more recently..
Medication side effects
Health issues
White Noise
Black out blinds
Lots of exercise
Diet i.e. cut out any stimulants later in the day (but the logic of healthy eating for me when tired goes out the window!!)
Colour therapy = colour of his bedroom
Good routine – established over years
Aromatherapy bath
Weighted blanket
Looked at his bed as he was throwing his mattress down the stairs
ie Beds for autism
Or Water beds!
Bed socks!
Personalised Hypnotherapy CD

I looked at Cs environment from both his and my point of view, to make his room safe for my peace of mind. Soft play walls, easy clean floor. Bullet proof windows.

And recently I have pulled up the stair carpet and painted a stair runner as in the words of Mason the Chimp from Madagascar who says it so eloquently. It wasn’t just the mattress that was being flung down the stairs.

I tried supplements like Melatonin, herbal and homeopathic remedies. Badger balm to Camomile tea (cooled and squash added) etc.. but no affect.

I had to rethink.

So if none of this works and as all behaviour is for a reason....

It usually boils down to one of these
Escape from demand
Escape from attention

As not being able to speak does not mean C has nothing to say.
So what is he trying to tell me??

“If you want to change the other persons' behaviour, a good beginning might be to start seeing things from their perspective”

C is 21. 21 year olds go out clubbing all night. OK so they then sleep all day and Cs not doing that.

It’s his choice!? Who am I to say he HAS to sleep?!

We often wrongly assume others needs are the same as ours.

So I have to put aside my own needs and expectations of my ultimate desire of a night’s sleep as I realise after months – this is not Cs goal.

Or another theory

When C’s away he’s worked hard at making sense of chaotic sensory experiences and then can’t switch off when he comes home. He needs the down time to process and doesn’t sleep instead he is engrossed in repetitive behaviour (which I won’t go into) lowering his stress levels and exerting control. This has now become a cycle - an unstoppable loop.

So I need to look at ways to change the routine and break the loop.

I bring him home by different routes. I change what and when he eats, what he is watching etc These things don’t work

I use Cs repetitive behaviour to ‘talk’ to him. I copy him so I’m not overloading him with my stuff, I am validating C as a person in his own right. I am trying to get him to engage with me and not just himself. I stim, sharing sensory sensations, I squeak, orienteering myself to our common language, I talk Shyriiwook (the neighbours must think there is a Wookiee convention!)
Every movement, flick, tap, hit, rhythm, sound is an expression of feeling, letting me glimpse into C’s inner world. Deepening trust, reducing anxiety and gaining self confidence. Relating.

This is the behaviour I changed – mine.
I stopped doing this in the evening. I stopped engaging – talking to him, looking at him. And its working - slowly (hope I’m not speaking too soon!). He’s stopped exerting his control over me by literally physically holding me hostage. He’s still not sleeping mind you but happily babbles to himself which I can sort of doze through. Only the odd thing flies down the stairs. And I can try and catch up on my sleep when he is not there!

You would then think I would sleep for England but I don’t. My mental Tardis is on over drive and I can’t turn my radar ears off. So I am now using all the alternative stuff I tried on C to help myself so I can stock up on sleep before the next round.

Well that’s my theory! That’s my Duct tape – and I’m 'sticking' to it for now (with copious amounts of coffee!)

What have you tried?

Monday, 23 August 2010

Without Alice

I remember very well the post DJ Kirkby wrote a couple of years ago when Denyse was diagnosed (at 40 years young) and
‘came out Asperger’.
Denyse said ‘ I am still the same DJ Kirkby except that now instead of feeling cross with myself for finding everything such a struggle, I am filled with a sense of pride at all that I have managed to achieve’.

Since then Denyse has had her first book From Zaftig to Aspie (a memoir) published. And Denyse is about to launch her second book – a novel   Without Alice.

I am asked to review many books on my blog – all of which I turn down, even this one! Instead I took the opportunity to ask Denyse some (tongue in cheek) questions. Denyse would also be more than happy to answer any of yours. You can find real reviews here.

Why were you diagnosed so late?

I was diagnosed late because Asperger's syndrome wasn't classified as a disability until the late 1980's by which time I had developed chameleon like coping mechanisms. Getting my diagnosis was one of the most life enhancing things that has ever happened to me as at long last I understood why I felt alien from the majority of people I came into contact with, and why I struggle with things that seem to come effortlessly to them like behaving in socially appropriate ways seemingly without effort. It is nice to be able to act as a role model for my son who is also an Aspie and my husband has benefited from my diagnosis because he understands that we really are totally different and we get along very well because of, or in spite of, our differences

Fulfilling and rewarding lives is the Government’s first ever strategy for adults with autism in England (the consultation ends Oct 22nd)  What are your thoughts on the actions for improving access to diagnosis and post-diagnostic support for adults?

I worry that once again the higher functioning autistic people are going to get forgotten about. There is a need for sheltered accommodation for those of us when we first move out of our parents homes and need to make a slower transition to fully independent living. Because we can come across as coping so well (we are chameleon people after all) it can be mistakenly thought that as we are holding down jobs, paying our bills able to cook clean and so on so then we can move out on our own safely. Wrong. One of the major things about autism is that there is a social developmental delay. So I was able to do all that I just mentioned and ended up moving thousands of miles away in Canada to work in a town called Banff. i was a hard worker, fairly good with money but so very socially vulnerable. At 18 I had the social etiquette and awareness of a much younger person and got led astray into a lot of things that a more socially mature person wouldn't have. Even now I am still very socially vulnerable but as I am in my 40's I think the gap has narrowed and therefore I am less at risk of being led astray. I have also learned that I am vulnerable and try to avoid putting myself into situations where I could get into trouble. I try to go out only with people who know me well so I can double check things with them. For example I can;t easily interpret people's reactions and can mistake surprise for anger and vice versa. With friends nearby I can judge by their reactions as to how I should behave in response to the situation. Though I am apt to say exactly what I think just like a small child and there isn't much they can do to stop me doing that....Life does get interesting with me around apparently. Sorry, I seem to have gone off at a tangent there...

The other thing I would say about the consultation document is that it needs to address the fact that high functioning people like me actually may not be functioning all that well under our chameleon colours. Sometimes we desperately need access to counselling and other coping strategies but because we hold down jobs, maintain relationships and so on - it can often be thought that we are coping well when in actuality we are struggling so much to keep it all together that we can't stop long enough to ask for help. Sort of like when you see a person drowning in water and they don't shout for help because they are too busy frantically trying to keep from going under.

I use writing to help me make sense out of the chaos of everyday functioning in a predominantly NT world but I still cry more mornings than not at the thought of having to go out and be at work all day, still fret over making socially unacceptable mistakes that will cost me my job. So even though I am very grateful to have a full time job with which to pay my bills, I dream of being able to write full time in the predictable comfort and safety of my home.

Without Alice is full of emotion and tangled lies which shows an understanding of others emotions and imagination. Your Aspie - you’re not supposed to be able to do this!!!

To be able to survive in a predominantly neurotypical world I have had to make a lifetime’s work of studying communication in all its forms. I find it fascinating how easy it is to misunderstand what another person means and the major events that can occur because of a simple misunderstanding or through lack of communication. I have learned how to function in socially acceptable ways, enough that I am able to work full time, but maintaining a neurotypical facade will always be the equivalent for me as a mainstream person watching a play in a language they learnt’ secondary to their first language. So, yes, the play can be understood but only after the words have been translated into the main language first. So the delay is always there and some of the subtleties of the social interaction are missed along the way, meaning it’s not as rich and fulfilling for those involved as it might be otherwise. But I am able to understand other’s emotions if I make the effort (though it is easier to write them into a novel that I can write in segments than to do it in real life), and I have always had a good imagination!

I understand you are also dyslexic - aren't dyslexic people supposed to 'hate' reading and writing?!!!

I’ve always loved writing, right from the moment that I realised that it was one way of expressing to others how different I knew I was. I began writing stories when I was very young and it has always been a good way for me to work through events that I find confusing or to try and explain why I reacted or behaved in a way that neurotypical people considered inappropriate. However, being dyslexic (you think they’d call it something easier to spell) means that I make a lot of typos and spelling errors, so to be sure my novel was in the best shape possible I paid to have it professionally edited before I submitted it to my publisher. I knew that I had to be confident about my novel if I was going to be able to sell myself as an author who has multiple disabilities, none of which would fit the stereotype of good idiosyncrasies for an author to have.

How do you juggle a full time job, being a loving wife, mother and writing?
I didn’t know autistic people could do these things!!!

Well I’m actually dyspraxic too so I’m not very good at juggling. I can just about throw one ball up in the air and manage to catch it, without hurting myself or someone nearby, in the process. Lots of mums nowadays have to work, raise a family and fit their hobbies in where they can. Just like with neurotypical people, autistic people are all individuals and there is a huge variance in what we can or cannot do. I work full time because I have to in order to ensure that I can pay my share of our bills. I remind myself (sometimes on an hourly basis) that doing so means that we can afford our house with its heavy duty insulation, nice open plan rooms and garden, where I can escape from the sensory overload that comes from living in a predominantly neurotypical world, instead of having to live in a council flat where I wouldn’t be able to. I’m very lucky to have a supportive (though sometimes baffled) husband who accepts that sometimes the lightest touch or noise can make me twitch. I also have a son who is autistic and I want to set an example for him that autistic people can manage to function in a neurotypical world to varying degrees with the right effort and the right support and that, most importantly, that being a success in the neurotypical world won’t deprive us of our autism.

You can find out more about Denyse at her blog, Twitter and Face book
'Without Alice' will be available to order from all good bookshops from October 4th 2010. However, you don’t have to wait till October, 'Without Alice' is now available to order direct from Punked Books

I’d like to leave you with this one hint; if someone ever tells you that they are autistic please don’t tell them that you are surprised by this revelation, it makes a mockery of all their efforts to maintain their neurotypical facade. Not that I have issues about this or anything. Ahem....*gets off soapbox*
'Without Alice' is the beginning of my own personal campaign to raise autism awareness and acceptance. Thank you so much for reading this everyone and I do hope you read and enjoy 'Without Alice'.

Tuesday, 13 July 2010

Health matters

C is doing sooo well. He is really enjoying night clubs and has gone from holding 1 of my hands to a 2 handed stim  dance from behind!
Since being in his new home together we have successfully sorted out 3 long term health issues his teeth being the latest one. (Health is difficult area because of C's challenging behaviour and difficulties communicating in a way that we can understand). The difference this has made to C is HUGE. He is showing progress in leaps and bounds which is helping to boost staff confidence with him.

It has taken 10 months for C to venture out into the garden.
He is now enjoying meals out there, hours on the swing and trampoline and even a night in a tent!

Vigorous head shaking hand flapping laugh :)
Collapsing with laughter!

From pressing buttons on a calculator C is now pressing keys on a roll up piano! And I’m just putting together a talking photo album. I’ll let you know how he gets on with that.
And look at this – I still can’t believe it – at the last night club he turned round!

Sunday, 20 June 2010

Operation tooth and nail

A general anaesthetic is a worrying time for any parent, but even more so when you can’t explain to your child what’s happening and they have severe self injurious behaviour and nearly 6ft tall!

Just to look at C’s teeth and cut his nails.
The day went as i thought it would apart from a slight detour!

The best interest meeting had gone well. We had been referred to a private hospital because it is smaller and quieter. Through the Challenging Behaviour Foundation parents email network it had been suggested to use Rohypnol as a pre-anaesthetic as you can’t taste it, smell it, it knocks you out and you can’t remember. Perfect. But in the UK it is not licensed, if you have an understanding GP you can get it privately. C’s GP agreed, a week later changed his mind. He also wouldn’t give permission to do a blood screening (haven’t a clue why?    Not wanting to take responsibility? )

The hospital wanted C to go in and have 3 MRSA swabs (underarm, groin and nose – I don’t think so!!) and they wouldn’t believe C’s manager that there was no way C would allow this intrusion, they were adamant as they had much experience of autism before!!!! This is when the label autism isn’t much use as people have general pre conceived ideas.

C went to the pre-op meeting with an entourage. Me, key worker, home manager and the service provider’s psychologist. So I felt well supported. We had agreed beforehand that we would not restrain C as this is just too traumatic for all.

Again they went on about the swabs, I tried to explain about the intensity of C’s SIB but it wasn’t until our psychologist said firmly he could fracture his skull that we got through to them. They were very good after that!! C also did some happy head banging which shocked them which also helped. They also didn’t agree to the rohypnol, but did agree to taking blood and cutting his nails.

The day of the op soon came. We gave C 10mg diazepam before leaving the home. C was going to be first on the list but because no MRSA swabs he was last so we had to wait. Wasn’t too bad as C was oblivious to what was about to happen. 25mg of midazolam was given to C in a drink – enough to knock anyone out. But not C!! He had other ideas, as soon as he had finished the drink he looked at me and then ran and lunged at the wall smashing his head, he did this again and again and again. I tried in vain to distract him, stop him to no avail. He wasn’t going to stop. I looked at the psychologist through tears and we all agreed to leave.

We walked out the hospital. Shocked hospital staff chased after us. (Like a scene from Benny Hill I can sort of laugh about this now but at the time it was very serious) Got in the car as staff tried to talk us into staying as they were worried about C’s breathing, C continued to head bang, so we drove. C calmed and was now fighting tooth and nail to stay awake. The hospital phoned me on my mobile and we went back to talk to them. The consultant and various staff were waiting for us at the road side. I agreed to give it one more go as apparently now 40 mins on the drug was at its peak and they assured me that C would not remember, and I didn’t want to put C through all this again another day. A wheel chair was brought out as they said C would not be able to walk. I opened the door, C got out and walked! Much to the amazement of staff. He was pliable enough now to let us guide him straight into the theatre where we held a mask over his face until he did eventually pass out. We were ushered out.

Didn’t have to wait long till we were called back. Blood had been taken, his nails were short (looked weird) and they had done 1 filling (which could explain some of C’s unexplained SIBs?) there was also some erosion on his back teeth from reflux. But after 21 years of not being able to brush teeth and poor diet – quite impressive. The consultant said because of the 'trauma' to Cs head he would recommend a referral to a ......... dermatologist?!! And C would not have to come in to visit a dentist again – the dentist would go to his home annually. So maybe they did learn something that day?

We were then told C would sleep for the rest of the day because of the amount of drugs and GA in his system. Half an hour (I held C’s hand for a whole half an hour :))))  ) later C was awake and up. We were out of there!

So we got there in the end, but at what cost to C’s head. It’s frightening and left me feeling emotionally exhausted for a couple of days. How it made C feel I can’t imagine. We have to do this again in 5 years. I will push harder for rohypnol next time. Has anyone any experience of this - or anything else that would work better?

I really hope they are right and C won’t remember.

Monday, 17 May 2010


C’s best interest meeting to determine his ability to consent for a GA didn’t go as I expected.
It was straight forward and very positive!! Everyone easily agreed that C does not posses the capacity to consent so his human rights have been denied (sounds awful doesn’t it) so we have the go ahead. We will next have a pre op meeting to try and sort out how we are actually going to go about administering the GA (with least risk to himself and others) as sedatives and tranquilizers have little or no affect, you can’t prepare C with social stories or pictures, visits etc nor distract him. And his fight AND flight responses are acute!

It was also agreed that we could take blood to test for various things, But no decision as yet was made about cutting his nails.
I am not at all looking forward to this as we have been though it once before and know how traumatic C (and I) found it. His self injurious behaviour is these days usually brought on by the actions of others (Suit you, sir? - brilliant article - a must read for staff) and this will be one of those times you can’t avoid.

We agreed to use clinical holding techniques with a cut off point if not working. build have produced a code of practice for physical interventions. Am researching other ways to avoid this if poss – any suggestions welcome!

But at least these days they are prepared to give oral care to people with learning disabilities. It is not that long ago expectations were so low and basic privileges were denied. Children were labelled ‘in educable’. LEA’s have only had to educate all children with special needs since 1970. Long stay hospitals are nearly all closed. Here’s a harrowing reminder of what those days were like - loss of individual and social identity, gender identity, family identity to name but a few – and it wasn’t that long ago

Attitudes are changing. We no longer have to shut our children away, or put up with babysitting (of adults and children) without meaning and value. We want the best education not just ‘training’. Opportunities, real choice and respect. Person first and neutral language. Personalization across all care settings. To be free from bullying on and off blog.
We are no longer afraid to rock the boat and ask for more. We want the same rights as everyone else. Laws are slowly catching up and being updated because of pressure as parents and disabled people have much information at their finger tips and higher expectations. We need to continue to challenge low expectations.
People understand the care and treatment choices available to them. They can express their views and are involved in making decisions about their care. They have their privacy, dignity and independence respected, and has their views and experiences taken into account in the way in which the service is delivered.
As of October 1st the inspections that the CQC do of adult care homes will be based on 2 laws:
The law that care homes are inspected under at the moment is the Care Standards Act 2000
this legislation will come out of use.
Which means things will be less process driven and more in tune with person centered approaches so outcomes should actually meet people's needs,

C’s service provider have been great as they are listening to me (and C) and are very receptive. C is one of the youngest therefore my thoughts are different to what they are used to. So my stirring input I feel has been constructive.
C has been stirring too!

The most exciting thing about both these photos is apart from feeling happy and relaxed enough to take his fingers out of his ears – C is doing these things independently and not hand over hand! (I have never seen C press a button before on his own!) Possibilities for Facilitated communication ??? Or i may have to invest in an iPhone with the new Grace app (picture exchange) Great initiative Lisa
But what i would dearly love for C would be to be able to turn his TV or radio on himself (especially in the middle of the night!). And now i feel he is getting there :))
Change can happen

Thursday, 1 April 2010


Before C was 18 I was always able to give parental consent to things. Now he is an adult – I can’t. It hasn’t been an issue till now.

We went to the dentist (hospital dentist that we waited over 6 months to get the appoinment)! And no surprises C did not let the dentist anywhere near him.
C has gum disease (you can see it when he gives one of his enormous smiles) Teeth cleaning he can’t do himself and depending on his mood depends how long he will tolerate a brush in his mouth. Diet over the years has been very poor. And he has acid reflux (which affects teeth as do some medications). He does not always show when he is in pain. I explained all this. But the dentist was very negative.

The NHS has a responsibility to ensure equality of provision of care to all groups in society. There is published evidence that people with disabilities are at risk from higher levels of oral health problems, they tend to have fewer teeth, more untreated decay etc.

So if they know this - why so evasive? Maybe the look of horror on the dentists face when she saw C head banging explains it?!

A week later the dentist got back to us and has called an in best interest meeting.  To see if it would be in C’s best interest to have a general anaesthetic or just to leave him till he tells us he has a problem. But of course we would somehow have to work out that it was his teeth making himself injure.

We also have to prove C’s lack of capacity in making a decision. It is assessed on if he cannot do one or more of the following: (He cant do any)
Understand information given to them about the decision.
Retain the information for long enough to make the decision.
Use or weigh up the information as part of the decision making process.
Communicate their decision by any means such as talking, sign language or blinking.

This is from the Mental Capacity Act (MCA DOLS) which were introduced in 2005 after a man with autism and learning disabilities was prevented from leaving hospital. His carers took the case to court where it was found he was deprived of his liberty unlawfully. So to prevent further breaches and provide legal protection for vulnerable people who may need to be deprived of their liberty in their best interests, the MCA DOLS were put in place.

There is an easy read version here which actually uses a case like C’s and they did agree to a GA. I know there are risks attached but trying to look at it from C’s point of view the risks from his head banging are greater.

So if C is granted this we are also going to ask ‘permission’ to cut his nails.
If C were a real person  he would have the same privileges as neurotypicals and not have to prove his capacity or have best interest meetings (in 2 months time!). Or have to ask to cut his nails! He would just be treated.
When C reached 18 as he cannot manage his own financial affairs I applied to the DWP to be his appointee and manage his benefits. It was very straight forward. (I also applied for a passport and a joint bank account before he was 18)

(UK) Power of Attorney, this must be set up with the persons consent whilst they have the capacity to choose who they would like to appoint.
If this is not possible a different process is followed and you need to apply to the Court of Protection to become a Deputy.
But there is a bit of a back log.
~ ~  ~
Can I ask – do people who work with your child know that you blog? Did you tell them or did they find out? Has it changed their relationship with you? C’s home maybe finding out I blog from an article that I have written and I know they get the publication. So should I be open with them??

And no C hasn’t said anything else :(

Thursday, 4 March 2010

C Spoke!!

After listening to high pitched oooooo’s and eeeee’s for 21 years I didn’t hear C's first words!! ‘Allegedly’ 1 member of staff heard C say... ‘hello’! Not only that but then when offered a choice of DVD’s he said ‘that one’.
I’m still trying to get my head round it! Did she miss hear? Was it wishful thinking on her part? I don’t know. But until more than one person hears C say something (if he ever does again) am trying not to get too excited!! But I never dreamt that his first word would be hello!! Very polite!

I was very honoured to be part of the editorial team for the Autism Strategy. And was excited to see what they had done with it when it was finally published and sent out on March 3rd. But I must admit to being very shocked - pleasantly so when I opened it to find a photo of C on the front page!
But this photo was taken at a not very fulfilling or rewarding time of his life. Some of you may remember when he was in his archaic first home they framed and sent me this photo after I had made several complaints about his treatment, (I actually blogged about this very photo at the end of this post back in 08!) I think they were trying to show me he was happy. So it doesn’t bring back very good memories.

But that aside I think the autism strategy is a good foundation to build on. Health and social care professionals and the public sector (i.e. the Police) will be given training in autism. So will depend largely on how good and extensive this training is. And local authorities will have to include autism in their planning of services.
The CQC have published their first yearly report on the state of health and adult social care in England. State of Care. Together with their new regulations which are based on Human Rights and with the Autism Strategy things are looking hopeful.

I wonder what C will say next?!

Tuesday, 5 January 2010

The hypothetical cure question....

"If I could snap my fingers and become non autistic, I would not - because then I wouldn't be me. Autism is part of who I am."

And that is how I see C. Autism is part of who he is.
Therefore I have never given any thought to the hypothetical question of ’curing’ C of being himself. Autism is his way of being. So I feel it is not my choice to make. It is not about me.
Jim Sinclair says it very well in his article Don’t mourn for us.

I was thinking of giving up blogging as C is doing well. Or maybe just doing the odd post if I had something to say. So when I saw this post - as C and I were talked about in some of the comments I felt it warranted a reply. So I gave it some thought.

And this is what I ‘honestly’ think...
I see Autism more of a difference than a disability. But I do see C disabled by society by attitude and prejudice, exclusion, lack of resources and at times the wrong support, Etc.

So if I were to give C a magic pill – a brain altering drug. Would he become ‘normal’?? Or would he still be 1 of thousands of NT people who self harm? Or would he be an NT who goes to heavy metal concerts and head bangs?! Would he still have gastro problems? Still thrive on little sleep? Would he still prefer to be a nudist? Would he still have a foot fetish?! Would he still get excited standing on platforms in his anorak watching trains? Would he loose his passions and excitement of the things most of us don’t even notice?
These are all normal traits that C already has. OK so maybe a bit more extreme!

There are many tangents/debates around all this. Low and high functioning. What about other comorbid conditions. Children who have tragically died from various therapies or restraints. Or murdered maybe from fear or lack of support? Disability is normal. Parental genetic testing? Prevention. Eradication.

So what do we really mean by cure? To make someone conform? To be socially acceptable? Assimilated into the collective?!
Why can’t society accept everyone is different?

The journey to acceptance is different for everyone as we each have our own issues to deal with I have seen some parents get stuck at different stages (especially anger). And as a society we take even longer as we have seen with differences of ethnicity, gender etc. Diversity is overlooked within groups and produce stereotypes that can reinforce prejudice and discrimination. And so it goes on.

Yes life has been very difficult at times for C and so in turn for me. But there is also much joy.
From the first day C started head banging (he even does this when happy) i have looked for ways to give him other means to communicate. He had early intervention. Went to the best schools i could find and has been under a Challenging Behaviour specialist team. I continue to look for ways to help C communicate without hurting himself. And make sure there are people around him who understand him and want to support and help him to. And C continues to show progress at his own pace. Acceptance doesn't mean doing nothing.
We all struggle at times. No one is truly independent. C does have a quality of life even with severe challenging behaviour. Which is what I have tried to show through by blog rather than ‘blowing roses’.

Education is the key. Not only for our children to help them reach their potential but to society as a whole in raising awareness as one of the biggest problems that I see is the way many people view autism.
It’s such a shame that this hypothetical question divides our community.

Follow up

Harold has continued this discussion on his blog - Autism Cure? It's About Functioning Not Conformity.
Kev from Left Brian/Right Brain has offered his opinion - So what is ‘cure’?
And the lovely Starrlife writes about Removing the Essence