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