ACT NOW

taken from 'ACT NOW (Autism Campaigners Together) blog 

In regard to  parliamentary welfare reform which took place yesterday:

"Autism was discussed in the chamber today, which seems to have irked some campaigners but we have to remember, it is a largely hidden disability and alongside all people with hidden disabilities, the autism community is likely to be hit the hardest" read more 

ACT NOW

UPDATE ON:My Son Has Been Out Of School For Almost A Year Now

(now 2 years by the time I write this)

It has been a year or so since I updated my story: My Son Has Been Out Of School For Almost A Year Now

Apologies for my silence of my fight to get my son back into school and a suitable school that would provide for his needs appropriately. Since this was an on going case, when I discovered that my blog was being read by my local government and their legal advisor, I felt it best to keep a lower profile in my blog, since anything I wrote about could be used in evidence.  

Having said this, my son and myself did win the long two year case, and from 8th June 2011 my son is now attending the school of our choice.  However I do not boast our success, but rather I am grateful that the correct school is now put into place, and write of this in hope to encourage others. My fight has been nothing unique, but common place to most parents of children on the higher functioning end of the autistic spectrum in the UK. It would be nice to think that our children could get the help that they are entitled to for their special needs, but this does not come automatically, and usually not come at all  without a legal fight. During these lengthy procedures, my son was growing up, and in fact by the time the final tribunal came to be, he was old enough, (14), to want to speak for himself in court, which he did, and to which all merit of winning the case goes to my son Ziggy himself, Well done Ziggy! (and of which could not have been achieved without our excellent legal support of course!)

Nerodiversity VS Disorder - The Other Great Divide Of Autism

 From Website:Autism Key -  www.autism key.com

"With all of the attention the autism-vaccine debate has received, often overlooked is another source of infighting within the autism community that involves neurodiversity vs. disorder. Neurodiversity is a movement commonly seen among those with high functioning autism and adheres to the notion that people with autism experience the world differently, not pathologically. As such, they are not looking to be "cured" and advocate for greater acceptance and awareness for themselves and others who are "different." Read More ...

"There is a real fear by many that the heredity model will take precedence and lead to eugenics as more and more parents opt to abort fetuses with a chromosome marker for autism, following the path of Down Syndrome where approximately 92% of all diagnosed fetuses are aborted. Do we really want to prevent the birth of the next Temple Grandin?"

Read More ...

'Cambridge University Researcher Endorses Neurodiversity', by Dr Thomas Armstrong

Dr Thomas Armstrong author, speaker and educational consultant, writes:

"I was happy to see recently a post on the Encyclopedia Brittanica blog that featured an interview with Cambridge University researcher Simon Baron-Cohen on the topic of neurodiversity.  When asked about the movement, Baron-Cohen replied:  “The neurodiversity movement has been a very positive influence in reminding us that there is no single pathway in neurological development, but there are many ways to reach similar end-points.” 

Baron-Cohen is most well known for his research in the field of autism and gender differences.  His book The Essential Difference: The Truth About the Male and Female Brain (Basic Books, 2003), presents a fascinating look at two dimensions of human behavior that exist along a broad continuum:  empathizing and systematizing.  Empathizing, of course, refers to the ability of an individual to get under the skin, so to speak, of another person and to know what they are thinking, feeling, or intending.  Systematizing, on the other hand, involves relating more to systems than to people.  Examples of systems include:  a computer program, a football game, a mathematical system, an automobile’s hydraulic system, or a poker game.  It may not surprise people to know that systematizers are more frequently male, and empathizers are more often female.  Women get together to talk about feelings, relationships, gossip, and other interpersonal behaviors. Men typically talk about what’s under the hood of a car, last night’s basketball scores, the latest software program, or what’s on TV tonight (and, of course, they control the TV clicker with greater speed and aplomb than women). 

Baron-Cohen emphasizes that these behaviors exist along a continuum, and that most people are in the middle of the spectrum, combining aspects of both empathy and systematizing.  On the extreme end of the systematizing side, however, one is likely to find individuals with autistic spectrum disorders.  A look, for example, at the savants of autism (estimated to account for about 10% of all autistic people), reveals their incredible abilities at manipulating various systems:  rapid calculation of mathematical information, incredible fluency with musical structures, extraordinary attention to visual-spatial features of the external environment, and the like.  Even those autistic individuals with low I.Q. scores are often found to be obsessed with systems such as the snow on a television screen or the workings of an electric fan.  What is significant in Baron-Cohen’s “system” (remember, he is a male!), is that we are all on the spectrum, so to speak, between empathizing and systematizing.  As he points out later in the Britannica interview, “The impact of dimensionalizing autism has been very positive, in terms of recognizing that we all have some autistic traits and that the difference between someone who needs a diagnosis and someone who does not is simply one of degree (they have more autistic traits) and their “fit” in society.” Read more

Pupil With Asperger's Syndrome Rejected By School

from The Guardian thegardian.co.uk

A teenager who was refused a place at his local school because he has Asperger's syndrome has won a conditional offer to study engineering at Cambridge.

Alex Goodenough, 17, taught himself at home from textbooks after Hertfordshire and Essex high school and science college (H&E) rejected his application to study there. Read more....

Article from 'Babycenter Community' website: 'A World Without Autism'

Quote from article Baby Center Community article:

"... would be a very boring, lackluster, unimaginative place. Did you ever why advocates enjoy letting people know about famous people with Autism Spectrum Disorder? Because it proves that Autistics are very intelligent people, very often genius in their intellect. It proves that Autistics can overcome their differences in thought processes to be not only productive human beings, but can make contributions that echo through history and across the entire world. It proves to overwhelmed, scared parents that their Autistic child can not only be successful in life, but be extraordinary."  Read more...

Brett's Blog: 'A World Without Autism'

Quote from Brett's Blog: 

"If autism could be cured, and if we, as a society, chose to cure it, what would that mean for our future?

How would it impact our lives, and the lives of our children (and descendants many generations down the line)?

What would society look like 50 years from now? 100 years from now, when autism (or autism-like traits) were no longer a part of our world?"

Autism Speaks Does Not Speak For Me: A Reply to Their Recent PSA

Lots Of Paper Work

In fighting for our Aspie' children's education many of us know all to well that there is much work involved. For those beginning the fight, you must be prepared for a lot of paperwork, your daytime may well becomes your office space at home. A full time job, but our children are worth it, who is going to fight for them if we don't? Below is just some of my own for example :)

UPDATE: (UK Cuts In Government Spending Hits Hard)

One week later, my son is already shown signs of regression without his home tuition. He has little interest or in getting out of bed and seldom leaves his room.
FULL ARTICLE

Please help and sign the petition 'ACT NOW'

quote from website:
"ACT NOW!

Those who live with Autism 24/7, 365 days each year will be at the core of these cuts and will have to live with whatever ensues as a result. We are not opposed to cuts as such and understand that reductions need to be made, however the magnitude of the changes that these cuts will bring about and how they will impact on a community that is already marginalised and discriminated against, must be taken into account"
please see details, and SIGN PETITION HERE

UDATE: (UK Cuts In Government Spending Hits Hard )

Presently my son is at home and without any services. Home Tuition has now stopped.

UK Cuts In Government Spending Hits Hard And Puts My Asperger's Son Into An Abyss

For the past 2 years my 14 year old son has been out of school and has got by successfully with home tuition, (see my earlier blog post). However, due to costs the tuition services used by the local authority have now been closed down, and the authority have not offered any replacement. At the same time Social Services now say that my son's high functioning autism is not disabled enough for any services.Quote from social worker who recently re-assessed his core plan, "it's not as though he can't walk or talk is it?", and talking to my son in the hall she went on to say, "there is nothing wrong with you, you are not disabled, you seem like a fine young man to me and there is nothing that we can offer you".

My son has a statement of special needs and since his ordeal with his secondary school will seldom leave the family home accept with his home tutors. An indipendant psychologist advices in her recent report of my son that schooling can only be reintroduced very slowly or it is going to fail.

The local authority recently backed me up in visiting a school I had discovered independently, since they had failed to fulfil their legal obligation to find him a school themselves,and have now put it on his statement as his school. They now claim that they have found him a school, which by law he is now obliged to attend, and so far as they are concerned they have completed their legal requirement. They are aware also, that implementation back to school has to be slow and carefully planned. However, I am not convinced that the school in question will be able to supply my son's needs and I am appealing against the decision, and visiting a new school which has opened up especially for asperger children aged 16 - 19 and more suitable. But my appeal is grossly affected by cuts in 'legal aid' spending also, making it extremely difficult to bring back the psychologist to further look into both schools and necessary to back up my case.

The home tuition has worked extremely well for my son, and without this as a routine and way of getting him to leave the home I fear that the situation will go backwards. What is needed is continuation of home tuition in view of keeping him focused, expanding the time he is learning, getting him out of doors, and in keeping routines whilst introducing schooling one or two lessons a week until he reaches full time involvement into a suitable school.

At the same time some of the his home tutors have offered to work privately with my son and to accompany him to venues which will aid physical and social development, but is also very expensive. Up until the government cuts this would have been covered by 'Direct Payments', which I believe no longer exists, and in any case I am told that my son's disability of autism does not count as disabled and that no equivalent service will be offered!

News has it that if the present climate continue, we can expect that things will get much worse.

Campaign - ACT NOW

"The proposed benefit cuts and the assessments will begin in 2013 for those on the Autistic Spectrum who are in receipt of Disability Living Allowance, Employment Support Allowance and other benefits. In addition the cuts across Local Authorities and the demise of Primary Care Trusts could have a catastrophic effect on the autism community, a group whose vulnerability already creates high levels of stress and anxiety to those involved."

Please help and sign the petition here

Article from Healthzone.ca

"A groundbreaking study suggests people with autism-spectrum disorders such as Asperger's do not lack empathy – rather, they feel others' emotions too intensely to cope". READ ARTICLE

In my experience the so referred to 'lack of empathy' is misunderstood as lack of emotion or feelings, this is so misguided from the actual truth. 'lack of empathy' is more to do with difficulties in how to interperate social situations.

NO STERIOTYPES HERE - Official Store Of The Neurodiversity Blog

Visit the 'No Steriotypes Here' store, I recommend a visit.

CORINA BECKER HAS CREATED A BETTER AUTISM AWARENESS RIBBON

Corina writes:

'Puzzle-less Autism Awareness Ribbons

For the longest time, I've been bothered about the autism awareness ribbons and other products displaying puzzle pieces. As a lot of autistics say when we object to it, we are not puzzle, we are people. So, since I've been aware of why it is offensive, I've been avoiding using it for any autism-related images.

Except my Anti-puzzle graphics for protesting Autism Speaks and other organizations.

However, I wanted an autism awareness ribbon that anti-puzzle autistics and other community members could display and use. So I made one, using the concept of my Neurodiversity infinity mobius and the spectrum part of Autism Spectrum".

View Corina Becker's blog 'No Sterio types Here'

"Ten Minutes with Temple" - An Autism Hangout "Beyond the Headlines"

A video from Autism Hangout

More on 'The Geek Syndrome '

Article from 'Wired.Com'
The Geek Syndrome - By Steve Silberman - see full article

"Autism gets to fundamental issues of how we view talents and disabilities," he says. "The flip side of dyslexia is enhanced abilities in math and architecture. There may be an aspect of this going on with autism and assortative mating in places like Silicon Valley. In the parents, who carry a few of the genes, they're a good thing. In the kids, who carry too many, it's very bad."

Issues like this were at the crux of arguments that Bryna Siegel had with Bruno Bettelheim in a Stanford graduate seminar in the early '80s, published in Bettelheim's The Art of the Obvious. (Siegel's name was changed to Dan Berenson.) The text makes poignant reading, as two paradigms of scientific humanism clash in the night. Siegel told "Dr. B" that she wanted to do a large study of children with various developmental disorders to search for a shared biochemical defect. Bettelheim shot back that if such a marker were to be uncovered it would dehumanize autistic children, by making them essentially different from ourselves.

Still an iconoclast, Siegel questions whether a "cure" for autism could ever be found. "The genetics of autism may turn out to be no simpler to unravel than the genetics of personality. I think what we'll end up with is something more like, 'Mrs. Smith, here are the results of your amnio. There's a 1 in 10 chance that you'll have an autistic child, or the next Bill Gates. Would you like to have an abortion?'"

For UCSF neurologist Kirk Wilhelmsen - who describes himself and his son as being "somewhere on that grand spectrum" - such statements cut to the heart of the most difficult issue that autism raises for society. It may be that autistic people are essentially different from "normal" people, he says, and that it is precisely those differences that make them invaluable to the ongoing evolution of the human race.

"If we could eliminate the genes for things like autism, I think it would be disastrous," says Wilhelmsen. "The healthiest state for a gene pool is maximum diversity of things that might be good."

One of the first people to intuit the significance of this was Asperger himself - weaving his continuum like a protective blanket over the young patients in his clinic as the Nazis shipped so-called mental defectives to the camps. "It seems that for success in science and art," he wrote, "a dash of autism is essential."

For all we know, the first tools on earth might have been developed by a loner sitting at the back of the cave, chipping at thousands of rocks to find the one that made the sharpest spear, while the neurotypicals chattered away in the firelight. Perhaps certain arcane systems of logic, mathematics, music, and stories - particularly remote and fantastic ones - have been passed down from phenotype to phenotype, in parallel with the DNA that helped shape minds which would know exactly what to do with these strange and elegant creations." continue reading this article......

Temple Grandin: Animals Make us Human

The N.A.S You Need To Know Campaign

THE FACTS (extract from N.A.S website 'The Facts')

Over 70% of children with autism also have a mental health problem. It doesn’t have to be like this. Children with autism can have good mental health just as anyone else can, and this campaign aims to make this a reality.

We all need to know that by giving children with autism the understanding and support they need, we help promote their health and happiness.

The Government needs to know that the mental health system is failing children with autism and that by acting now we can change our children’s future.

Mental health practitioners need to know how to help and support children with autism and mental health problems.

Families need to know that they are not alone – that we are here to help them every step of the way.

Sign the Campaign: 'You Need To Know'

School and Aspergers

What is Autism & Neurodiversity? - My Personal Little Theory & How We Have Got It Wrong

I would like to put forward my own little theory here. My simple explanation of is to compare the human brain as a bit like the portable tv of the 1980's that we would use in bedrooms or camping holidays etc. It came supplied with a little aerial attached to the top of it, or you could plug in an extra indoor areal which you could move around the room to obtain a picture. Either way it was a case of moving the aerial to get the best overall reception. It was more often the case that you could always get one or two particular channels perfectly at the expense of loosing reception altogether on the other channels. This is how I would best describe autism, not un-similar to having a particular channel working perfectly at the expense of loosing the other channels to a poorer or even none existent channel. For the neuro-typical it is better to have an overall ability to view all available channels a bit fuzzy even rather than one channel perfect and the others less accessible.

Although, as I am aware, this is a very simplified explanation of the human condition, my point is the necessity for open mindedness on all diversity as a natural part of our make-up. At the same time each one of us is likely to contain various degrees along the scale of both neuro-typical and autism (neurodiversity). But the tendency is to see neuro-typical as normal on one side of the scale and view autism as abnormal or disadvantaged on the other. This is nonsensical.

An Unfair System

Today as technology and knowledge has increased into intense need for integration and specialization there is a demand for all individuals to access, and obtain skills at its very least to some ability in most fields and areas of knowledge or subject. At the same time we also rely upon a specific need to lean towards and rely upon some amongst us to be ardent specialists in a particular field who will help us to progress i.e., in english, maths, history, science, and so on. Education today remains mainly focused upon creating little clones for the workforce rather than towards overall progression.

How things are set up here in the Uk at present, is that children are expected to do well in as many subjects as possible in school. From this they get awarded an examination result to put to their name. However it is only when one can show a certain number of successful examination results that an individual can be proved worth of furthering their education into a given field of specialization and pass the test to enter into further education or university. Ironically this is set up towards one end of the scale, namely neuro-typical, and leaves anyone on the spectrum unrecognised and a hard fight to access further education in a given field, despite the fact that they are much more likely to do better in their field of interest than most. In other words, this means that the specialization abilities in an autistic or asperger's child is often over looked or unnoticed. The tendency is to focus on disabilities rather than abilities. Its all back to front!

Autistic or neuro-typical, its not as simple as that. In the scale of things I believe we all contain varying degrees of both, but it is only when the tilt is more one way than another, and life becomes problematic for an individual that there becomes a focus for diagnosis. For my own part I am viewed as a neuro-typical but labeled a bit of a dumb blond so to speak. But this is due to not being able to spell, add up in maths, left handed, and unable to remember directions in any shape or form. Despite not being given a diagnosis of any kind, please allow me to bare witness that if you cannot shine as average in general subjects and expectations for the workforce then furthering research and learning or getting any recognition for what you are good at is one hard struggle, since you are already condemned as useless to to the system.

I have a little friend who is genius in every subject he approaches, but his school were more worried about his quirky behaviour rather than his profound ability. Even when he became amongst the top 10 in maths in the UK, they still wanted to see his mother to ask her why he never seemed to have any reading books in his school bag. The truth was that this was because he had already read them all! Now as examination year is here for him, his teachers are suddenly in full admiration for him since they get merited by the number of passes they can achieve from their pupils, and this boy will pass. But at the same time, he for the most part learnt by his own merit, and not the teachers! How ironic is that?! "Good luck my young friend, I know you will do well! and you will take the school up with you".

High exclusion rate for autistic pupils (courtesy of 'BBC News')

http://news.bbc.co.uk/1/hi/education/748892.stm

"Children with autism and Asperger syndrome are 20 times more likely to be excluded from school than their classmates, researchers say.

A report by the National Autistic Society (NAS) says one in five pupils with the conditions are excluded at least once, compared with an estimated 1.2% of the total pupil population.

The researchers found that teachers across the UK frequently have to send home children with autism because schools lack the necessary expertise, time and specialist support.

While nursery schools and primary schools are showing an awareness and ability to respond, the situation deteriorates in the secondary sector, they say. 'Complex condition'

The report, called Inclusion and Autism: Is it Working?, was published on Monday for the launch of Autism Awareness Week.

It says that exclusion of people with autism continues into adulthood, socially and economically.

Only 41% of parents feel their adult child is included in society, and only 2% of adults with autism are in full-time paid work, according to the research.

NAS education advisor Mike Collins said: "Autism is a complex condition, with children having difficulties relating to people and communicating their needs.

"Parents are telling us that everyone involved in the day-to-day running of schools need specific training to recognise and support their children."

Secondary Special Needs - Inclusion and Autism (courtesy of website 'Teachers TV')

Includes a short film, see link.
http://www.teachers.tv/video/21826

"Four boys on the autistic spectrum are observed during their school day to see how their individual needs are met by both mainstream and specialist staff.

As autism is a developmental disorder, not a learning disability, the majority of secondary age children with a diagnosis attend mainstream schools.

Difficulties relating to autism can be made worse by the busy secondary environment. Complete inclusion of pupils with ASD into school life can be difficult to achieve.

The challenges of ASD are discussed by inclusion manager Craig Smith and mainstream teachers, and learning support practitioners demonstrate how they help in class."

The Mercenaries Around Autism

As a relatively new diagnosis (in the scale of things), autism has become the ideal marketing tool and target for private clinics, individual medics, scientists, writers, manufacturers and film makers, etc, and even some film stars or others in the media or public eye. Autism is fast becoming big business now that for the most part the days where autistics were permanently locked out of the way in institutions and given experimental drugs, and even chained, are behind us. Let us never go back there! Before you go into so called treatments, by people who convince you that they know what they are doing, please I urge you, to be vigilant.

Sorry to sound so severe, but I'm not pussy footing around this one, as not only does this affect our children, but the new up and coming generations. And not only how autistic people will be seen and treated in society at large, but how our society of tomorrow will be molded.

There will always be those in the world who will prefer to keep the view, 'if it is different, kill it, faze it out,' or , 'lets see if we can make a lot of money out of it first', or, 'lets shape it to suit our needs'. But in order to have the power to do this, they must gather numbers of people on their side to support them. The best way to do this is to target human emotions in areas of guilt, or feelings of inadequacy. They then further go on to set up themselves to be emphatic to the terrible life you must be leading having given birth to an autistic or disabled child. They target the unaware, new parents, or parents of newly diagnosed children on the spectrum. they will then try to win you over with ideas of cures and treatments. The old 'medicine man of the wild west' are still here today, with treatments and remedies, but no longer travels in wagons, but work from clinics and establishments. They will drain you of your life savings in order to obtain what they offer. They keep the farce going by using words that have a negative impact such as, 'disorder', 'abnormal', and 'cures' to win you over into their flock, so that they can then supply you with their ideas of solutions, treatments, cures, and to themselves a source into your bank account.

It is all far from the truth, that your autistic child will never be able to function as citizen in this world. They may need more help in getting there perhaps, or may appear to be locked in their own world, but would not you or I take a similar stance in a society which refuses to recognise you or accept you for who you are. Above all they need an open communication channel and to be listened to.

With the world wide web Asperger people are beginning to express their feelings to the world, it's a hard task in itself, in a world that meets them with disbelief and disapproval. (please see my video collection on my web page on "Some Useful Links On The Autistic Spectrum ). And for more severely effected people with autism, where speach and language is difficult or none existent, it would be very easy to assume that there is nothing going on inside them, and that they are locked in their own world, but without the open space given for communication, then what choice would they have? accept to be locked into their own isolated existence. But please let me assure you, that contrary to what may appear on the outside, there is plenty going on the inside of these people. And who is it that locked them away into their own little planet in the first place and what choice would they have?

Along with the 21st century, we more and more ready to sell out to a "if you don't like it take it back and get another one" kind of attitude, are we really going to stand back and watch this happen to our children? Are we really going to sell out to the nearest idea of what our children should be like according to media intelligence? PLEASE! Our up and coming world of tomorrow and genetic engineering will be giving us the choice to pick and choose what kind of child we will be having before they are even born in terms of hair, eye, skin color, and intelligence. And we will be media guided as to who and what is or is not going to be desirable or acceptable for the society of tomorrow. But do we really want a new society of little clones, who then in turn could well grow up to seek even more ideologies to compete with, and so it goes on, always seeking better, in trying to enhance the human condition. Personally I do not believe that we are seeing what is in front of us when making these types evaluations. We should look closer home. Your children are a gift, and if you have a child on the spectrum, then you have a very special gift, which like all special things needs nurturing and caring for, and you may be surprised what will unfold. You have a very special little person there indeed. But please give them the open space to grow and communicate. Remember that autistic children often have a different learning curve, but work wonders with the things they learn. They have a particular ability to step out of the 'general' and give intricate focus and explore a territory or subject thoroughly, at times this will seem obsessive, (obsessions), but it is often the case that they may grow to be masters in their chosen field of interest. I deem that if we are going to progress, that our important little individuals on the spectrum are a necessary part of the human condition for change and innovation. We should never overlook this. (see my earlier blog: Parents Supporting Genocide For Autism

And to all those on the Spectrum, please carry on speaking out.