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.

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

Up until now I have kept quiet about my personal situation in dealing with my son's school, but it now seems appropriate at this point to share what I believe to be an all too common situation for Asperger's children and education.

SUMMERY: Presently my son, Zigmund, now aged 13, has been out of school since February 2009, (almost a year, as I write this). This is not because of anything that he has done wrong, but due to the fact that his present school flatly refuse to supply a dedicated helper to be with him in the classroom as stated as a requirement in his statement. They have pointed out to the local authority during the last large meeting, (and in front of my son who was present at the meeting) that they cannot possibly manage him in their school and do not want him there. The school pool their recourses for special needs, and supply a variety of different classroom helpers, who are generally young, inexperienced, and know little about autism. The local authority in trying to keep an amicable position asked if I would accept home tuition from the 'Hospital Tutorial Services on a temporary basis only, to allow extra time to consider wether a better placement may be found for Zigmund. Since the situation had now become so negative for my son emotionally, I agreed to remain open minded and accepted the temporary home tuition.

I had an educational solicitor present at the meeting, and also a close family friend who known Zigmund for the past 7 years. This was because when I had attended past meetings, it had been like sitting amongst a den of thieves. They tried to focus on my parenting skills, and to blame me my son for his 'behaviour', and they tried to make out I was a bad mother. To which I informed the panel: that since my other two children have done well in school, and without problems, and that Ziggy himself did well throughout his junior education, that I could not see how they could possibly come to this conclusion. All problems began, and gradually got worse over a two year period from first day that he attended his present secondary school. I had tried to explain the situation for a child with autism, and to outline some of the difficulties and how they have been misinterpreted and dealt with inappropriately by detention. But the panel ridiculed me and laughed in my face, it was as though I was talking in another language.

For most of the past year my son was supplied with 2 hours home tuition per week. A request was sent from my solicitor to the local authority for an extension of more hours, and from October 09, he was granted 4 hours a week tuition. This is still well below the legal educational requirement in the UK. In the meantime I have visited other schools, but no success so far. Most interviews with schools arranged by the local authority (apart from one), were to residential schools, miles away. At which point I now ask, why is it that my son, who is still legally attached to his present school, has jumped from being asked not to attend his school, to now, looking at residential? This is insane! (although I have heard worse tales of his school being responsible for convincing parents that their Asperger's child was so difficult, that the child got shipped off to live with relatives abroad!).

HISTORY: In September 2007 Zigmund attended his first day at his secondary school. He was full of enthusiasm and very happy. On the second day he got detention for not covering his exercise books. This was just the beginning, since then he was sent home for almost anything, for e.g., not tying being able to tie his apron strings, in food tech, and refusing to put it on, Delaying in getting his exercise books out in class, complaining that he was feeling a kind of claustrophobia and therefore taking extra time to enter the classroom, the list is endless. Over the course of his first year, Zigmund's was unfairly excluded from his school, over and over again for things which are common to his condition of autism. He was sent to detention consistently, and at one point I witnessed his headmaster aggressively shout in his face, army fashion, "YOU SAY SIR WHEN YOU TALK TO ME BOY! - WHAT IS IT YOU SAY?! YOU SAY SIR! I would not want this for a neuro typical child, let alone a child with asperger's. This was frightening.

By the second year, my son had changed from a happy and enthusiastic child into a very stressed young man. He began rocking which I had never seen him do before. He took to hiding with his head under his coat at a table in the school dinner hall, and got sent home for that too, I was told, "we cannot have our pupils unruly wandering about the school", he began to spend long periods in the school toilets. At home he stopped socialising with the rest of the family, seldom left his room, and refused to go out of doors.

DISCRIMINATION: I contacted the discrimination authority, who told me that to have a case I must have records of all exclusions, and no older than within the past 6 months. But the school refused to reply to any legal requests to supply a list of exclusions, and now that Zigmund has not been attending school for 11 months, they have got away with it. I know I should have kept my own records, but never thought I would need to at the time.

THINGS THE SCHOOL TRIED TO DO: This is a school that is of good reputation and academically successful, and gains merit by it's successful examination results. The school had a long list of special needs provisions which they were proud to say they had supplied for Zigmund. The list looks good on paper, but the provisions were for general disabilities and not at all appropriate for autism and did little to help my son to access lessons. The school then tried to involve other community body's such as emotional behavioural, and mental health institutions, parenting classes,etc., all of which I had covered before my son's diagnosis some years ago. They tried to convince the local authority that he was 'special school' requirement, rather than 'mainstream school', as is on his statement. So when I requested for my son to be restatemented in order to outline a clearer understanding of his needs, the school were all for backing me up, and in fact on paper have stated that the request was from them. They had been hoping to get his statement changed to special school so that they could wipe their hands of any responsibility. But this was not the case, and the new statement still states a mainstream schooling requirement. Worse of all, I think is the schoolls total lack of compassion, and their efforts to portray my son as someone with emotional difficulties or traumatised, which he absolutely is not. Or at least he wasn't until he had been on the receiving end of their school for 2 years, where he was constantly misunderstood, bullied, and unfairly blamed for his condition of autism.

A WORD ABOUT THE TEACHERS: My bane is not and never has been with classroom teachers. They have the difficult task of teaching all sorts of disabilities and without adequate training needed to back them up to do the job properly. For the most part I have no malice with individual teachers, as they work under a governing body. The classroom teachers and I worked closely together to help my son. The problem was that I quickly became available 'on call', and they were ringing me up constantly asking how best to deal with one situation or another. I was even taking calls from a dentist chair at one point! No, the problem I have is with the head teachers, and those who are involved not so much in the classroom, but in the functioning of the school and it's finance. I found them to be quite bloody minded. For 2 years I have had to witness my son, suffer the weight on his young shoulders, at a mere age of 11/12 , to cover for a gap in the system and made to feel his autism was a crime. This is wrong! and caused a lot of emotional damage.

TODAY: Today my son will still seldom go out of doors since his traumas around schooling. But its not all bad news: since his rest from the constant bullying and misunderstandings from the head teachers trying to manipulate him out of their budget or school funding, he has come on leaps and bounds and the time at home has seen in him a huge recovery. Zigmund is back to his old self, telling jokes, enthusiastic in his interests, spending much time with us in the living room again and happy, (but want desperately want to go to school). As well as this he has somehow managed to conquer many social aspects in relating to others, and is quiet charming and positive in his approach to life.

The case is still on going, and is now going to the High Court. It has been a long and tedious haul with much exhausting work, that has been like a full time job. At times I hardly left my home office, but I want to share hope, never give up! we are many! I wish all the best to all in carrying on the fight.

Jakki-D