Suffering from

Just read something today which contained the line suffering with autism. It is this persons belief that individuals do not suffer with autism but do suffer from the people or environments around them, statistically 80% of challenging behaviour is caused by us and the demands that we place on individuals with a diagnosis. If the world was populated with only people with an autism diagnosis then no one would be suffering. Food for thought.

Facts about autism

Autism is a lifelong development disability. There is no cure. Ok let me say that again “THERE IS NO CURE”. I have met a lot of individuals on the spectrum that find the notion of trying to cure them an insult. There is nothing wrong with having Autism, it is not brain damage but a brain difference. Wenn Lawson http://mugsy.org/wendy/ calls Autism a difrability not a disability. I know I'm saying it again but there is no cure. This doesn't stop people selling snake oils and other potions claiming they can cure your child andI know from experience that in the first years of diagnosis it is tempting to to change fate. One of the reasons I hate celebrities is because they weild emense power over the masses and people believe what these people say. Jenny McCarthy

https://en.wikipedia.org/wiki/Jenny_McCarthy believes that she cured her sons Autism and has even written a book about it. This was then exacerbated by Opra Winfrey http://www.oprah.com/index.html as she made this a book of the month. Please oh please stop listening to these luddites. Love your children for who they are and stop trying to change them.

People will also believe everything they read, one article a few months back claimed that eating broccoli can cure Autism. Even if there has been a study it does not make it true. Let me explain, if a paper has been published saying that broccoli can cure autism then it has to be subject to peer review, which means that other individuals duplicate the study and in theory if the theory is solid then they should be able to replicate the data. If this is done by several groups then the reaserch is probably sound. If however no one can replicate the data then the reaserch is probably a load of b******s. So just because one group says it's true wait for further reaserch before force feeding your kids broccoli. So when the media even the BBC make a grand statement, it doesn't mean it's true. Love your children for who they are and stop trying to change them.

Autism is a 'hidden disability' there are few physical traits but it is pervasive which mean it impacts on every aspect of their life. This is the main problem you as parents will face. People only believe what they can see and this includes diability. If they can see the disability, people nowadays are more understanding but you will come across a lot of individuals that believe all the invisible disabilities are made up such as ADHD, Dyslexia, Asperger Syndrome and Autism and thats when you keep coming across the phrase “We didn't have these kind of things in our day”. Love your children for who they are and stop trying to change them. Has this sank in yet. My one friend took her son to Euro Disney http://www.disneyholidays.co.uk/disneyland-paris/?gclid&ppc&gclid=Cj0KEQjwnMOwBRCAhp-ysqCwypkBEiQAeSy1-c52fAnR6x-50dfdubSPT9QL-TQH4XQ4LxzjehtHPDIaApJh8P8HAQ 

Frank is nineteen and Severely Autistic. On day one he ran around and when he was near the cafe areas he wouod take food from unsuspecting diners. They would respond with things like “Well really” and “Please control your child”. On day two Frank refused to walk around the park because it was a hot day so his dad hired Frank a wheelchair to use for the day. Occasionaly Frank would take food from peoples plates and this time the family were met with “No, really it's ok”, “No don't worry about it”. This is why some parents have now taken to putting their children in tee shirts such as these http://www.autynotnaughty.co.uk/

Autism is not a Learning Disability and is not a Mental Health problem. Although if you do not work with the child in an Autistic friendly manor will lead to an increased risk in Mental Health problems developing in later life

Autism is not exclusive. Individuals with Autism can have additional difficulties including Learning Disabilities and Mental Health problems. A friend of mine Sam who has Asperger Syndrome and developed Mental Health problems in his teens says there are two types of people with Autism. The ones that throw the desk at your head and the ones that sit at the back of the class in silence. The ones that sit at the back of the class are more at risk of Mental Health problems.

The squash effect

On Sunday evening I was very privileged to be invited to an awards ceremony that was being held by a local autism support group called Spectrum https://www.facebook.com/events/1120527107987090/ when I entered the venue I was so taken back by the amount of people that were in attendance and as the evening progressed you could feel the whole room was filled with so much love. Awards were given to various individuals who had reached milestones in their life such as overcoming bullying being really good at football, art or by being an amazing person. There were singers performing such as the Scott James  https://www.youtube.com/watch?v=UGCrzmJfwcE a young man singing O sole mio, another young man playing the piano and a young man doing stand-up comedy, all very inspirational.

 It was a very moving experience and I began to think about why the big organisations don’t do things like this. It also hit me that this amazing group was like an underground movement and why had I not experienced anything like this before, so many questions. Then I thought is this how all projects start and then as they grow and grow into major entities does the love just dilute like water being added to concentrated squash. Is the future at the hands of the small groups whose love never dilutes?

The Free Home School List

Now and again I will post some random stuff that may be of interest, here is an example.

Free Home School List 

Through history

Autism and Asperger Syndrome have probably been around since the dawn of time. Now according to your mother that's just not the case and she probably says “We didn't have it in our day”. The correct response to this is “No mom, you locked people up in your day”. This unfortunately is very true, prior to 1970 if you had learning difficulties an IQ under 70 then you were deemed ineducable. With regards to the higher functioning individuals then they would have been working in engineering, education or the factories. Temple Grandin says that being bought up in the 50's and 60's was probably the best time to be autistic as the world was more black and white back then. They had rules such as 'children should be seen and not heard'. When you got caught steeling apples out of your neighbors garden they would give you a cuff around the head and you wouldn't tell your parents because they would hit you. The teachers could throw chalk or the board rubber at your head and you didn't say a word. There was no quoting the human rights act like they do now aye mom.

In her book Explaining the Enigma, Uta Frith http://www.amazon.co.uk/gp/product/0631229019?keywords=utta%20frith&qid=1443553680&ref_=sr_1_sc_1&sr=8-1-spell identifies several individuals throughout history that may have had ASD. Such as the Wild boy of Aveyron https://en.wikipedia.org/wiki/Victor_of_Aveyron who originally it was believed that he was raised by wolves, research now suggests that he probably had autism. In one account they fired a gun behind his head and he did not react. To this day some parents report that their children fail basic hearing tests and the professional pronounces that their child is profoundly deaf, and mom says they are not because Billy (generic name) hears a crisp packet three miles away. Uta Frith also recounts a story of a monk in the 17^th Century who was asked to go down the road and bring back the leg of a pig, this was to help with a cure for an ill colleague. The rest of the monks when he came back became very angry with him as he had not killed the pig first which could be an indicator of someone who is very literal.

Speaking of someone who is literal, a friend of mine many years ago used to work in a factory. Every morning they would send someone out to get the newspapers and the bacon sandwiches for breakfast. This one chap said to the other “Get me the sun newspaper, if you can't get me that get me something else”, much to everyone's amusement the man returned with a pork pie.

We are broken

A young girl with autism and severe anxiety issues was in primary school this week and did not want to be included in circle time so sat under a desk. The teacher shouted out the child to join the group, the teacher assistant told the teacher that the young girl was anxious and perhaps just this once could she stay under the desk. The teacher replied that 'This child has to learn who is in charge'. The teacher continued to berate the young girl. The teaching assistant again pleaded with the teacher to leave the young girl along. At this point the teacher said 'Get her out of my classroom now'.

Now you tell me that we are not broken.

Fight for your rights

As mentioned in the previous post, autism spectrum disorders are covered under the disability discrimination act http://www.nidirect.gov.uk/index/information-and-services/people-with-disabilities/rights-and-obligations/disability-rights/definition-of-disability.htm

So the next time you have the dilemma of knowing if you should fight or not, just replace the disability of autism with something more obvious such as a wheelchair user. Would you accept a school giving a child in a wheelchair a detention for not attempting to climb a flight of stairs? Of course you wouldn't, well just as their disability prevents them from climbing the stairs your child may have sensory difficulties prohibiting them from sitting still or walking into a class room because of strip lights. For now you have to be your child's advocate so don't let anyone bully your kids, professional or otherwise. Now go get em.

Weighted blankets

If you are in the market for a weighted blanket then I cannot recommend this lady enough.

https://www.facebook.com/Lisas-Handmade-Weighted-Blankets-1456293574673285/

To diagnose or not to diagnose that is the question.

You will meet certain individuals that believe you shouldn't label people. They say things like 'Labels are for jars' or 'It will follow him forever'. The reality is that we label people anyway. Wouldn't you want your child labeled as autistic as opposed to naughty, spoil t, lazy. Paul Wady in his book Guerilla Aspies http://www.amazon.co.uk/gp/product/B00R1S26F6?keywords=paul%20wady&qid=1442571459&ref_=sr_1_1&sr=8-1 tells how he was labeled mad psychotic, pervert, dangerously deranged. Some professionals will even try to put you of seeking the diagnosis, which I find really sad, and one of those reasons maybe that with a diagnosis you have rights and you may be entitled to help. Which of course all cost money that your local authority doesn't want you to have. They won't say this directly that would be wrong and of course they wouldn't do such a thing wink, wink. Hopefully you are starting to catch on now when I talk about systems. These are the little games professionals play with peoples lives. You are not a name you are indeed a number on a calculator or a figure in a ledger.

Getting a diagnosis will help you get the help you need and help you fight for your children's rights, and yes you will have to fight every step of the way.

Mrs Grant had to go into school because her son had told her that the teacher would not let him go out to play because he had not finished his work. It turns out that whilst Jim was doing his work he kept fiddling with his tangle toy that he is allowed to use to help him focus on the task at hand. The teacher felt that he was focusing more on his tangle toy than the work. Of course Jim was focusing more on the toy because he was agitated. It turns out that other children had not completed their work but the teacher had let them out. The teacher said 'Jim needs to learn to focus less on his toy and more on his work'. Because mom knows that autism comes under the disability discrimination act http://www.legislation.gov.uk/ukpga/2005/13/contents she told the teacher that play times are really important for Jim to help him deal with his anxiety and you will never I repeat never stop Jim from going out to play. Now without the diagnosis she would not have been able to do this.

Another benefit is that you can learn about autism and in turn this will help you understand your child. If your child has autism or asperger syndrome they have it, get a diagnosis.

The Birth and Death of the Triad of Impairment

So your child has just received a diagnosis of either autism or Asperger syndrome, so what does this mean? For your child to receive this diagnosis it means that they will have difficulty in three/four areas which are as follows. Communication, Social Interaction, Rigidity of Thought and Sensory Issues. Originally this was called the Triad of Impairment (A lot of individuals on the spectrum hate this because they say that all we neurotypicals do is focus on what someone with autism can't do and not what they can't, which is fair comment) Now imagine that these are interlocking circles, I use this to show how we as neuro-typicals (that’s our label) change all the time. One way of looking at ourselves is to say that we are many different people to many different people. Take communication as an example, how many of us have a telephone voice? One minute we are talking to the family in our regional dialect then as soon as the phone goes we suddenly turn into someone who is quite posh then no sooner have we done this and we realises it is someone that we know then we suddenly change back to our regional dialect. We also talk to different people differently, for instance you talk to young babies in a way that’s described as motherese, such as using over the top facial expressions and dramatically changing your voice. Now imagine if we used the same way of communicating with our manager at work, that interaction probably wouldn’t end well. The same can be said for the way we interact socially. In the press recently people have been getting into trouble at work because of what they have written on the social media website ‘Facebook’. The problem is that they have forgotten that they have befriended their friends down the pub and also their colleagues at work. The floor in doing this is that we present as different people to each social group and when we make a comment that our friends down the pub find funny we get into trouble. This is because if you had acted or spoke the way you do down the pub at work then you would not have got the job. For me what helps us adjust the way we are is our ability to have flexible thinking. We magically seem to just shape shift from different personality to different personality dependent on the social situation. When someone has autism you tend to get one version of themselves and regardless of the situation they can only be their one true self. During the course of this book you will come to realise just how complicated we neuro-typicals truly are.

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Dan who has asperger syndrome and my-self were giving a series of lectures on autism in Gibraltar. The night we arrived we made our way to a local pub and began to chat over a glass of beer. As the night wore on we began to broach subjects that only friends should discuss i.e. politics. The next day whilst we were having breakfast Dan looked really worried so I asked him what was wrong. Dan told me that he was worried that I was going to get us deported, when I quizzed him further to find out why he told me it was because of what we were talking about the night before. He was convinced I would talk about our discussion with the group we were about to meet. I had to explain to Dan that Grant in the pub is in fact a different person than Grant the trainer and in no way would I jeopardise our trip or in fact my career and there was no chance of me saying anything that would upset or be deemed insulting to any group that I would work with. It took until the end of the day to convince Dan that I would stay true to my word.

Now inflexibility of thought helps you to do amazing things like see into the future such as predict the consequences of your actions. It also helps you to problem solve if things don’t go according to plan and helps you plan things such as your day or breaking down a task. Without this skill you would become quite anxious, which is a very common trait of individuals on the spectrum.

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 The two manuals used for diagnosis are the DSM 5 http://www.dsm5.org/Pages/Default.aspx which is the American model or the ICD 10 https://en.wikipedia.org/wiki/ICD-10 which is the World Health Organisations diagnostic manual. The DSM 5 no longer uses the term Asperger Syndrome and has replaced it with ASD which is Autistic Spectrum Disorder. The DSM 11 which is due in 2017 will also follow suit and already in the UK some clinicians have stopped using the term Asperger Syndrome. The term the triad of impairment is also being phased out as it didn't sit quite right with the diagnosis of Asperger Syndrome. It is now referred to  as the diad of impairment which is Social Communication and Rigidity of thought or inflexible thinking and sensory issues. I will try to break down each category in the up and coming weeks.

A video of a typical parents evening

https://www.youtube.com/watch?v=rtVCGSaVRFM

A little video with essential advice

My version of Everybody is free to wear sunscreen (Autism mix)

And in the Beginning

Autism is often described as a spectrum, in it's simplest form think of a line from 1 – 10. Imagine 1 -5 is classic autism or Kanners Autism. As well as Autism the individual will have learning difficulties which may also be on a sliding scale. Now 6 – 9 would be classed as high functioningAutism and 10 would be an individual with Asperger Syndrome. So to be clear Asperger Syndrome is on the Autistic spectrum it is not a separate disorder. If the scale continued then an 11 would be a child with PDD or pervesive developmental disorder not otherwise specified. This is an individual with traits of Autism but not enough to warrant a full diagnosis. Interestingly to work with these individuals you would still use the tools that are used with an Autistic individual. Recently though individuals such as Carly Fleischmann http://carlysvoice.com/home/aboutcarly/ or Tito Mukhopadhay https://www.youtube.com/watch?v=Nfiap3a7Tuo although non verbal have both started writing about living with Autism so although they initialy were diaagnosed with severve Autism and Severe Learning difficulties this puts the learning disability side into question. In the UK you get a diagnosis of a learning disability if you have an IQ under 70.

Leo Kanner https://en.wikipedia.org/wiki/Leo_Kanner wrote a paper in the 1940's called Early Infantile Autism also at that time a man called Hans Asperger https://en.wikipedia.org/wiki/Hans_Asperger wrote a paper on Asperger Syndrome. Both were from Austria although Kanner moved to America and published his paper in English where as Asperger published in German. World War 2 was happening at this time so anything that was published in German was filed away. So it was only when Lorna Wing https://en.wikipedia.org/wiki/Lorna_Wing and Judy Gould http://www.autism.org.uk/our-services/diagnosing-complex-needs/about-the-lorna-wing-centre/our-staff/dr-judith-gould.aspx discovered Asperger's paper that it was realised that Autism and Asperger Syndrome had very similar traits, and so the Autistic Spectrum was born.

The problem with looking at it like a scale of 1-10 is that people that rate low we see as needing lots of support and those scoring high needing no support, which isn't strictly the case. Those scoring high are also described as having mild autism and this a very big mistake. No one with a diagnosis has mild autism, every individual is battling with their own difficulties, even if you can't see them. I believe that this is the hardest thing for professionals to grasp.That's why rather than look at the spectrum as a scale it is better to look at it as a pallet of colours.