The Inclusion 'Illusion'

Vivien Sheffield

According to the US Department of Education, the population of children with special needs/learning disabilities will be growing at a rate 3 times faster than the general pediatric population by next year. This means nearly 6 million children, or 10 % of the population between the ages of 5 and 19, will receive special assistance during their formative years and beyond.

Autism is the fastest growing of these classifications, conservatively accounting for a 900% increase in the 10 year study period (1992 - 2001). The incidence of autism has increased at least 20 fold in the last decade. Dr. Michael Goldberg, a pediatrician on the clinical teaching staff of UCLA is quoted to have said ‘ It is time to focus attention and funding on what can only be called an epidemic’.

If this is what they are discovering in the US, then the UK is unlikely to be far behind them. However, as there is no national register of the autistic population in this country, it will be years before we find out the extent of the potential mountain we are facing.

In the meantime, without benefit of these type of statistics, the UK government, in their wisdom, has decreed that all children with learning difficulties will be better off being educated in mainstream, primary and secondary schools, alongside children of normal learning abilities. In other words, they must be ‘included’.

A good idea, you might think. At last children with disabilities will no longer be segregated by being in special schools. They will be accepted, and learn from their peers. Isn’t that what every parent wants?

This idealistic vision of all children being educated together, breaking down prejudices and barriers, is an illusion.

‘Inclusion is not synonymous with integration’ so says Kent County Council’s booklet called ‘All Together Better’ produced last July. ‘Inclusion’ it appears, is a first step acceptance by schools that it is their responsibility to educate all children with special educational needs. Integration may, or may not, happen later. Schools have no say in this, and despite what may be said to the contrary, neither do the parents. The government and LEA’s have made the decision for them.

Inclusion is being imposed on us all. It is slipping silently in, barely noticed. Many parents are unaware of its implications. Some that are, are hoping it will go away. Those parents acutely aware of inclusion, know that it is taking away parents freedom to choose the school they feel to be right for their child. This is particularly important if you are a parent of a child with a learning disability.

Unfortunately, because most parents of autistic children are worn out, exhausted and logistically fragmented from one another, their voices are going unheard, despite how strongly they feel.

‘Inclusion is going to happen, whether you like it or not. We’re not here to be negative, we want positive input to try and find a way to make it work’ a representative of Partners for Parents, rather patronisingly, I thought, told me, ‘The LEA are not to blame, they are just following government policy’. Didn’t we hear something similar said after World War 2? Just following orders. So why can’t the LEA tell the government it can’t be achieved without extra funding, I asked. She looked at me with one of those ‘I can see you’re going to be a bit of a nuisance’ looks and replied ‘ It doesn’t work like that I’m afraid’. Faced with this attitude, I regret to admit that I am just like my star sign. It’s red rag to a bull. I hate being told I’m having something, whether I want it or not. If this were France, we’d have barricaded the streets by now.

With classes of 30+ children, over stretched teachers struggling to teach National Curriculum, reach Ofsted report standards and achieve League Table status, how you may wonder, are schools to cope with inclusion?

There are a number of unanswered and worrying issues. It seems to be assumed that inclusion will place only troublesome, disruptive children, who have been excluded (and whose families must therefore be ‘dysfunctional’) in ‘sin-bins’. Autistic children can present challenging behaviour in class, and they do not all come from dysfunctional families.Presumably, they fall into the same category, so they will be escorted into the ‘sin bins’ too.

Teachers cannot be expected to totally adapt their teaching style and delivery to accommodate all these newcomers. It is a fact that autistic children cannot learn in the same way as normal children. So are we to assume that schools will be changing their entire teaching methods in order to educate the class minority?

Teaching autistic children requires professional expertise - and autistic professionals, as any parent of an autistic child will tell you, are more rare than platinum. Are ordinary teachers now expected to be experts in the field of autism, semantic pragmatic disorder etc etc ? Where are LEA’s going to attract the experts from to train the teachers?

Firm building blocks of support are needed for these children .Not only one to one classroom support, but adaptive teaching methods, strategies and equipment and committment are required. To do this properly and be effective, will cost money, lots of it. The foundations of support must be put in place first, and be unshakably solid, before any parent can be confident of handing a vulnerable child over to the school system, or of any quality of education for their child. An education the law says they are entitled to have.

No extra funding is going into the ‘inclusion’ project to help achieve this monumental task. LEAs will achieve it by rearranging and redistributing existing funding. This means closure of special schools, leaving even fewer places for children who cannot manage in mainstream.

Inclusion has presented a window of opportunity to some LEA’s, who have already shut down special schools in their areas, placing over subscription on the one, maybe two, mainstream schools that have autistic units attached. One to one support is to disappear. Children who fall just below the statementing level, will lose out totally. There is a lot of talk about early intervention at primary school level. Very little, if anything, has been planned or said regarding support at secondary school level.

Autism is a spectrum of disorders, which, very simplified, boils down to a social communication disorder. I don’t think there are any parents of an autistic child who wouldn’t give their right arm for their child to be able to chat, play and mix happily with other children. The fact is, they aren’t able to.

Being the parent of a delightful, charming, 10 year old boy who suffers from Asperger Syndrome, which is on the autistic spectrum, I see first hand the struggle he has to keep up with lessons, make friends and to fit in with other children. His is already ‘included’, but not integrated.

My quest for his next school has filled me with mounting despair and fear. I listen to the litany trotted out from every Head teacher I’ve met. ‘ Well of course, the main focus of everything we do here, is inclusion’.

Ergo, get the kids into as many mainstream classes as possible. Drive them towards taking exams, but if they can’t cope, present challenging behaviour etc., then put them in ‘sin-bins’, poky porta-cabins (sorry, autistic units) all day - except of course at break times.

Children with social communication disorders are particularly vulnerable to bullying. They will be thrown out, at the mercy of bullies every playtime and lunch time. No, inclusion is definitely not what I want for my son.

There are many children like him. Unable to take exams, not able to cope in mainstream, even with autistic units.They need to attend specialist language and communication or specialist schools There are pathetically few specialist schools in the UK. Specialist schools with fees of over £25,000pa, cost money- money with which LEA’s are unwilling to part. It is arguable that it is more important for autistic children to be able to communicate effectively and survive in the world, than to be exam successes.

Asperger Syndrome is sometimes referred to as a high functioning autistic. In a way, they are more handicapped than others. It is easy to assume that because they look normal, use language seemingly well, and appear to be just like other children, that they can cope in a mainstream. People’s expectations of them are the same as for any other normal child.

At the age of 10, my son is on his third school. He went to two independent schools, neither of which wanted to know when they realised he had learning difficulties. After all, independents are about educating to high standards, so they can’t afford for their reputations to be sullied.

In the early days, I wanted him to be in a normal primary school. I wanted him to aspire to be like normal children. Lets face it I thought, he is going to have to live and work with these people when he leaves school. What on earth made me assume that the role models he would have would be good ones? The fact is, my child, who lacks any degree of cunning, guile or cruelty, has been exposed to all of those unpleasant qualities found in some children. Because he is different, he has been a target for children who should know better.

Geography and history have passed him by which is hardly surprising, because he still has not grasped the concept of the passage of time and has little awareness of where he fits in with everything around him. Maths is a problem because he does not understand what phrases like ‘more than’, ‘less than’ ‘as much as’ etc mean. He takes all language literally, so much of what is said to him makes very little sense, and impairs his ability to converse or follow what is going on in lessons. I could go on.

He has now been ‘included’ in a mainstream primary school for 2 years and has a statement of educational need. He is the first autistic child they have had. It is to the credit of the school that at present, he is happy and wants to work. The school is very caring and the staff do their best to educate him, but feel they are just baby sitting him. They worry that he is falling so far behind his classmates, that his self esteem and confidence will eventually disappear. They are totally frustrated because the expected support has not materialised.

We assume, perhaps naively, that the professionals would set, not just smart objectives, goals and strategies, but advise on, or provide, equipment and visual aids to assist the education process. Imagine the surprise to find out that the specialists are only required to provide resource and strategies. They do not have to train staff and they are not even allowed to work in contact with your child.

The quality of people’s work is only as good as the quality of the people employed. So if you happen to be unlucky, and your ‘specialist’ is not very knowledgeable, proactive or enthusiastic, then the quality of your child’s education falls flat. Having a statement of educational need, does not automatically mean that it is met by your LEA, as solicitors and battle weary parents across the country will confirm.

A more cynical person might say that, having grasped the ‘inclusion’ holy grail with a vengeance, some LEAs are deliberately running their outreach services into the ground. Then they can tell us all how much better the services will be once ‘inclusion’ is in place. I doubt that any money saved will be used to help those that need it.

Many parents of autistic children, finding that there are no schools suitable to meet their children’s needs, or having fought LEA’s to Tribunal, or who are just too plain exhausted to fight any more, are turning to home education. In Kent, parents have actually moved out of the county, wearying of the battle, to get an education for their children. That they should be driven to do this is a disgrace.

Inclusion IS an illusion. It will not happen with any degree of success in my son’s school lifetime, if ever. I despair for his future, and the future of children like him, because you only get one hit at education.

I object to having inclusion imposed on me by faceless people professing to know what is best for my child. It’s all very well for David Blunkett to sit there and moan that he wished he had gone to a normal school. With respect, Mr. Blunkett you are not mentally impaired, like autistic children .

Parents should have a real choice of how and where their child is educated. They should not have to put up with the lip service paid to their wishes, by education authority officials, who are totally budget driven, and have no intention of agreeing to their choice of school.

I am utterly disillusioned with the education system in this country and I know that I am not alone.

 

This article is reproduced by kind permission of the author.

© Vivien Sheffield 2000.

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