When Autism-in-Mind decided to pick up the gauntlet and begin a campaign to raise awareness and fight for the educational rights of our ASD children it was because we had come to realise during the last three years that educating our children was probably the biggest issue that parents were facing the length and breadth of the UK.
On a daily basis we are either contacted by, or speak on the Internet to, parents who are experiencing enormous problems just trying to access a half decent education for their children?
There are several factors surrounding this issue and to understand why AIM are so concerned by the situation that many parents now find themselves in I will need to make you aware of these factors.
Firstly there has been a huge rise in the numbers of children receiving a diagnosis of autism. This in itself is worrying but you would imagine that because of the rise in numbers that the educational system would be being trained and funded to deal with this increase. Sadly this is not true. Funding to LEA's has now very much being devolved with much of the money going straight into the pocket of the school. This should be good news in theory, but in practice many schools are now left to decide for themselves how and on what they spend their SEN budget. Training for most of our mainstream schools is at the moment not mandatory. In fact unless a school makes a specific request for training they can quite happily blend into the background and ignore any problems that are being presented by children attending their school who have a diagnosis of autism. If a school is already strapped for cash is it going to spend X number of pounds on autism specific training? Even if the training is 'in house' they will have to pay towards the training and may consider it not to be worthwhile. Especially when there are still many schools that will not accept that some of our children do have autism? They decided that our children are just badly behaved and can be made to 'fit in' using whatever method they deem is best. So we need legislation, which states quite clearly that training should be in place before a child enters the school, or as soon after a diagnosis as possible, and that that training MUST be recognised and accredited. Farm Yard training benefits no one especially not the child. In a bid to placate parents some LEA's are now training up Learning Support Assistants to deliver speech therapy and to be ASD specific support. Where are they getting their training?
The newly revised Code of Practice has led to a whole new bunch of problems for many parents. The idea is that a child can now 'access' the support they need just be being placed on either school action or school action plus. Parents are being told all over the UK that a statement is no longer necessary and in some Authorities that their children no longer meet the criteria for a Statement. This is actually illegal. The revised Code of Practice gives guidelines and recommendations. As yet there has been no legislation to make it law. AIM is asking how the complex and specifics needs of a child with autism can be met without a formal statutory assessment? Surely an assessment needs to be undertaken to ensure that the needs of that child are being met?
Assessments and Statements should be undertaken by independent organisations . How can an LEA, who will ultimately be responsible for paying for whatever is written into a Statement, be trusted to give a 'true' record of that's child's needs? Many of the professionals involved in gathering the evidence for a Statement are on the payroll of the LEA.
There are other major issues surrounding Statements, which also need to be urgently addressed. If a child with AS or HFA is put forward for a Statement they will very often not meet the criteria, in some areas they will not even meet the criteria to be placed on School Action Plus. Why? Because these children have an average or above average IQ. We need to see a system of assessment that assesses our children not on their IQ but on their autism and how the autism affects and impacts on every single minute of that child's life. We need to redefine what the words learning disability really means. If a child with autism is in a classroom where its senses or being challenged then it's an ability to learn is being disabled. One very worrying issue is the number of children who are being given a diagnosis of Aspergers syndrome. It has become acceptable to issue a diagnosis of AS if a child has verbal abilities. Once a child has a diagnosis of AS then on the whole it is expected to make its way through the mainstream education system. There appears to be a huge difference in the diagnostic criteria being used across the UK , with some AS diagnosis being seriously questioned by parents and other professionals.
Although our campaign is focusing on education you cannot discount other factors, which will impact on a child's education. Therefore when a parent sees a health professional with their child it is essential that that professional is also ASD specifically trained. Some professionals are making inappropriate observations and comments, which are being recorded on documents, which are then shared within the school system. This is where we are seeing parents, once again, being subjected to inferences and underlying threats that they are not caring correctly for their children. The new Green Paper 'Every Child Matters' opens the door to grand scale information sharing. So it is important that any information being shared about a child and family is correct. If we have inadequately trained professionals being able to pass judgements and share information about us AIM fears that parents are going to feel even more under observation. AIM are now beginning to ask questions regarding the qualifications of professional people who are responsible for writing recommendations and reviews for our children.
Parents are often too afraid to fight for the right of their children because professionals make comments and veiled threats that lead parents to believe that they are being observed. LEA's are very defensive about the quality of education that they are providing. If you question their abilities they will question yours only they will have the weight of the system behind them.
Since our children have returned to school we have been made aware of some very worrying things by parents and sadly some of these worrying things are taking place in Autism Specific Schools. It is now being documented and accepted that children who struggle in their educational setting will often have life long mental health problems. The only people who can do something to stop this from continuing are we parents. Because if services and resources are terrible to access and inadequate for children then please be aware that they are ten times worse for our adults with autism.
AIM believe that parents can make a difference but to do this we must all join together and speak out with 'One Voice' When Terry Rutherford travelled 2500 for our National Call for Action two years ago, he constantly told parents and their support groups that 10,000 parents all muttering to themselves would never be heard but 10,000 all speaking out together with 'One Voice' could not be ignored.
There must be common ground between the Organisations , Groups and Parents that we can all agree with? So far every person or group we have spoken to have all agreed that our Education System is currently abusing our children. So let's do something about it together. Please join us with our BIG ISSUE, which we know is also yours. Let's fight for the education that our children deserve and not the education they are being forced to accept at the moment.
Sign our Petition on line at http://www.autism-education.com You can also fill in our National Questionnaire which will help us to prove that children all over the UK are getting a very raw deal. Ideally we also need the support of groups, organisations and people who provide services for our children. The petition and questionnaire can be printed out onto a hard copy and be signed in that way. Help us to help you - please.