Wednesday, 21 November 2012

Congratulations Anna Kennedy OBE!

Act Now For Autism would like to say a collective congratulations to our very own Anna Kennedy who received her OBE from the Queen today, for her services to autism.

Anna is one of the founder members of Act Now For Autism. Anna voiced her concerns about the impact that the cuts were having and the Work Capability Assessment in the House of Lords during a cross All Party Group meeting on Disability.
Anna has spent the last twenty years campaigning for greater understanding, awareness, acceptance and services for children, adults and families living with autism. 
When school, after school refused to offer Anna’s two sons the right placement, Anna opened her own school Hillingdon Manor. Hillingdon is a specialist primary for children with autistic spectrum disorders, and it did not stop there. Since then, Anna has won a host of awards and has written a book about her struggle to get a good education for her children.

In Anna’s own words this is why she does what she does:

"Ever since I started my own journey to help those with autism I have been struck by the woeful lack of facilities there are for people with this sometimes challenging condition. Of course autism and Aspergers don’t just affect children and teenagers they are a lifelong condition for many people who can often face perplexing problems and behavioural difficulties. The facilities available have never been great and now, with local authorities and charities suffering from severe cuts, the situation is getting much worse. While there is naturally a focus on children with autism and Aspergers I am saddened that older people often get ignored, as well as their families and friends. Families and carers need respite breaks, access to better educational facilities and help with finding employment for their children - its difficult enough for all young people looking for work these days so having to deal with autism or Aspergers makes it even harder, and sadly for many they simply give up trying because of a lack of response and understanding from employers. I have seen, directly through my own two sons who suffer from autism, and through countless encounters and discussions with many young and older people just how much they have to offer. As I said in my book these people are Not Stupid just different, and often with enormous skills, intelligence and the ability to master many complex tasks and projects."

So let’s raise a virtual glass to Anna tonight – congratulations Anna from us all

See the video of Anna getting her OBE here

Tuesday, 20 November 2012

Identity Theft

Identity Theft by Carole Rutherford.

Identity theft is a big issue not just in the UK where I live but also globally. We are all aware of the need to be vigilant, to be careful with our information and even more careful about whom we share information with about ourselves. We are constantly reminded of the need to do whatever we must to protect our identity, and yet children with autism are having their identities stolen and we are doing very little if anything to stop this from happening.

I believe -
* We are stealing the identities of children with autism by forcing them to ‘fit in’ to a mainstream education that was never set up to wrap around their complex needs.
* That trying to present in a neurotypical way is impacting on the emotional wellbeing of some of our children, leaving them with lasting mental health issues.
* That inclusion is an illusion.
* That we need to start accepting children with autism into our society as the individuals they are.
* That what we have on offer in many of our schools is a method of education which seeks to normalise children with autism. 

It should be possible to enable children with autism to live in our mainstream world without asking and expecting the child to give up any part of its identity. 

In the UK we barely give children with Asperger Syndrome and High Functioning Autism a backwards glance after their diagnosis. Very few children with Asperger Syndrome or High Functioning Autism have ongoing access to therapies or specialist educational programmes. 

Children in specialist provisions can routinely access therapies and interventions simply because they are attending specialist provisions. Children with Asperger Syndrome and High Functioning Autism are treated as the poor relation of autism and are going without. 

Mainstream environments and lessons tend to be tweaked here and there and made to do, but ‘Made to do’ is not working for our children. Reasonable adjustments often appear to be whatever a school or an individual teacher believes is a reasonable adjustment without active regard and/or knowledge of current guidance and legislation. Support is often minimal. 

As a child on the autism spectrum may appear to be ‘normal’, teaching staff may criticise or punish the child for failing to do what the other children are doing. An important goal for training is to help staff realise that when children on the autism spectrum do not do as requested, it is usually because they have been misunderstood. A child with a severe visual impairment would not be placed in a school without low vision aids and mobility training. Similarly, a child in a wheelchair would not be asked to walk, yet a pupil on the autism spectrum is often expected to manage in school without autism specific supports (Jordan, 2001). 

Children are made to wrap around the educational provision already in place as opposed to the provision wrapping around the child. The emotional wellbeing of our children is being eroded and their very core is at risk of being stolen. 

I have been supporting families living with autism in the UK for 11 years. Far too little has changed in that time. I understand that families usually seek my support when they are having problems. Those whose children are happy do not need support. For the last 11 years I have heard the same stories repeating time and time again about the struggles that children with Asperger Syndrome and High Functioning Autism are having within our mainstream schools. With some of those families I have seen firsthand how trying to be someone that they are not is impacting on their lives of their children.

I have long believed that what we have in practice here in the UK is an ‘inclusion illusion’. 

Inclusion is a feeling. Just because our mainstream schools now educate children with Asperger Syndrome and High Functioning Autism it does not mean that inclusion has been a success. A child needs to feel accepted, safe and comfortable before they can feel included, before they are enabled to learn. 

Here are some examples of inclusion in mainstream schools and how it is impacting on some of our children:

A six year old boy is sat at the back of a classroom with a learning assistant segregated from the rest of the class. He is not allowed into the playground at playtime because he is considered to be too rough with the other children. He is not allowed to eat in the dining hall with the other children either. He sits in the same room as children all day but is allowed no interaction with them. He keeps telling his Mother that he just wants to play with the other children. 

A seven year old boy with autism and fine motor control issues, refers to himself as ‘a naughty boy’ because he cannot present his work in the way in which his teacher is expecting. He says that the teacher is cross with him every day because they cannot read his writing and the other children in his class laugh at him. 

An eight year old boy with autism is kept in at playtime because he has not finished his work. This happens on a regular basis. The child also has dyspraxia and finds writing both painful and difficult. The child is also denied ‘golden time’ on a Friday. Golden Time in a Primary school is a time for relaxation and fun as a reward for good behaviour during the week.

A nine year old boy who is suffering from sensory overload in a busy classroom sits underneath his desk in an attempt to find a place where he can self regulate. The teacher tells their class just to ignore their peer because he is being ‘very silly as usual’. 

A ten year old boy does not enjoy football or any physical activity that involves contact with another pupil. The boy is called ‘gay’ by his peers. The boys in this child’s class no longer speak to him. 

An 11 year old attends his first day in a comprehensive school. He is handed a map at the school gate to find his way round the building and told to fasten the top button of his shirt and pull his tie up. The child spent the whole of one of the day unsupported, frightened and feeling as if he was going to choke. 

An 11 year is leaving a lesson to attend a hospital their teacher tells them not to hurry back as they will not be missed. 

The examples above do not fit with my definition of inclusion

‘There are currently around 71% of children with autism are educated in mainstream schools with the remainder in specialist provision. Given the right support, children with autism can — and do — thrive and achieve at school.’ (Ambitious About Autism School Report 2010) 

Almost three quarters of our children with autism are being educated in mainstream schools. Are these children being given the right support? Do they have access to the support and therapies that could make a real difference to their lives? 

The Ambitious about Autism School Report 2012 stated 54% of all teachers in England do not feel they have had adequate training to teach children with autism. Although the total number of children identified as having special educational needs (SEN) is falling, the number of children identified with autism in schools is increasing. It is worrying therefore that over half of all teachers do not feel they have had the right training to teach children with autism. 

I cannot understand why there is so much emphasis on the need for early intervention and therapies for children with autism, when so few children with Asperger Syndrome and High Functioning Autism ever receive therapies and interventions on an on-going basis. 

It would also appear to me that when we talk about early interventions and improving outcomes for a child with autism, what we are really talking about for children who have a diagnosis of Asperger Syndrome or High Functioning Autism is seeking to make the child as ‘normal’ as we possibly can. We actively pursue neurotypical outcomes without asking what would be a positive outcome for a child with autism. 

Recommendations from the Bercow Report published in 2008:

Communication is crucial;
Early identification and intervention are essential;
A continuum of services designed around the family is needed;
Joint working is critical; and
The current system is characterised by high variability and a lack of equity. 

What might our children be capable of achieving if they were able to access on-going therapies and were allowed to be themselves? 

We give the illusion that we are actively including children with autism into our schools. All too often as soon as a child with autism enters the system we begin a push the child to conform to what we (neurotypicals) have decided is the norm. We appear not to be able to understand why a child with autism cannot understand why we should be pushing them to act in a way that is alien to them. 

From a very young age we are asking children with autism to put their autism to one side while they are in school and push them to replicate the actions and behaviour of their peer group. 

I am not suggesting that we should not be doing everything that we can to enable children with autism to live comfortably and as independently as possible within our mainstream world. But are we ever really going to enable them to do that by asking them to pretend to be someone they are not?

Parents are also expected to push their children to conform. They are told what their child needs to do in order for them to ‘fit in’ and achieve the outcomes that society so robustly views as a mark of a successful education.

Less than 1 in 4 young people with autism continue their education beyond school. Young people with a disability are more likely to report being fairly or very dissatisfied with their life so far (17%) than young people without a disability (7%) at age 19. Young people with a Statement of Special Educational Needs at 16 are twice as likely to not be in education, employment or training at 18 than those without SEN.17 Despite improvements in the education system or children with autism over recent decades, the outcomes these young people face are still woefully poor. 

Translating progress at school into employment and independence in adult life remains a huge challenge. 

Could the outcomes for children and young people with autism be so poor because we are not employing the right methods and strategies to teach them in a way that is meaningful for them? 

The brains of children with autism are wired differently to the brains of neurotypical children. They view the world around them differently. They learn differently. If we adapted our teaching style to meet their way of learning then who knows what it might be possible for them to achieve. And yet right from the very beginning of school life children with autism have to learn in the same manner as neurotypical children. 

Autism and Education Trust Summary Report 1 for Professionals: 

B1.5 Key educational needs of children on the autism spectrum.

Even though the special educational needs (SEN) of children and young people on the autism spectrum are going to be different from one individual to another, there are important points which need to be borne in mind for all individuals in terms of their education. In particular, they will need explicit teaching in all aspects relating to communication, social understanding and inflexibility, that is, in areas of learning and development that other children acquire naturally through experience. In addition, any other problems, such as sensory processing problems, dyspraxia, dyslexia, and general learning difficulties, will all interact with the autism and the child’s general characteristics to create special needs. 

Sitting children with autism next to their neurotypical peers is not going to produce the explicit teaching in all areas of communication, social understanding and inflexibility that the report so clearly states that all children on the autistic spectrum will require. Children with autism do not pick up effective communication and socialisation skills up from their peers. They simply feel even more out of sync with their peers. 

Our insistence to teach a child with autism in the same way as their neurotypical peers continues. Our quest to make them ‘fit in’ is robbing them of their identity and sense of self in the process. Resistance appears to be futile. Neurotypicals appear to have a need to assimilate everyone.

By the time some children with autism makes the transition from Primary School to Secondary School they are already struggling with their sense of self. This only intensifies with their transition to Secondary School where there is even more pressure for the child to conform, not only from their teachers but also from their peers. Secondary School age is often where a child with autism becomes so confused and torn about who they are supposed to be that they actively rebel against their autism. 

Some children will implode while others explode. The emotional wellbeing of these children is at risk. Some children are experiencing mental health issues even before they transfer into a secondary school setting. 

If we do not know who we are and feel comfortable in our own skin then how can we be expected to make our way successfully through life? A sense of self is vital for our emotional wellbeing. Emotional wellbeing is essential if we are expecting children with autism to become adults with autism who can actively seek and maintain employment and live independent lives. 

Only 15% of Adults with Autism are currently in fulltime employment. (The National Autistic Soceity) Why is the number of adults in full time employment so low? 

The illusion of inclusion suggests that children with autism are being accepted and that we are embracing their uniqueness. I speak to far too many parents who tell me that their children are not being accepted for themselves and nor is their uniqueness being embraced. 

We hear much about barriers to achievements and yet the biggest barrier to achievement for some children with autism is our insistence that they present, behave, learn and achieve in the same way that neurotypical children do.

We do not allow children with autism to be themselves nor do we teach them about themselves. We are isolating our children in mainstream classrooms, often without even knowing that there are other children in their school, who like them, have autism. 

It’s as if by making them aware that there are other children like them in the same school as them it would hinder the process of normalisation.

There is, to me, a big difference between enabling a child with autism to live in our mainstream society and forcing them to masquerade as neutortypical in our society. 

Everything that happens in a mainstream school is geared to the needs of typical children. Children with autism are measured by the same tools used for neurotypical children. 

A child with autism has Essential Tremor which means they have trouble with handwriting, which will never go away. Many children with autism also experience problems with their handwriting. One of the goals in the child’s IEP is to improve their hand writing. 

Is this not constantly reminding the child that they are failing? Should this even be a target in their IEP? 

The same child was being kicked by a boy in his class so he told his form tutor. The head of year then made the child write down exactly what had been happening. Because the tutor could not read what the child had written they asked him to re-write it. But were still couldn't read it so she shouted at him about his bad writing, so he scrunched up the paper and threw it away.

It is recognised that children and adults with autism often suffer from self esteem issues and lack of confidence in their abilities. Is this not being made worse by pushing children with autism to do things they are not able to do and to be someone who they are not? 

Our expectations of children with autism are wrapped around our expectations for neutortypical children. We are not taking into account the fact that children with autism have a pervasive developmental disorder and that they are often developmentally and emotionally a long way behind their chronological age, and therefore their peer group. 

Many of our leading professionals believe that to find a child with autism’s emotional age you need to take away a third of their chronological age. If this is correct it means that a child of 9 years old will be functioning emotionally at the same emotional level of a 6 year old. This effectively means that children with autism will always swim against the tide with no hope of keeping up with their typical peers. 

Our children are not only struggling to make sense of the world around them and where they might fit into it, they are also struggling to make sense of themselves. While they are doing this they are also expected to learn.

There are many things that a child with autism needs to be taught. One of the most important things is about themselves and yet the only provision we are supplying them with is access to their typical peers. We expect, and in many cases demand, them to measure up to those peers and not themselves.

Children with autism have autism. That does not mean that they cannot see that children who do not have autism are not like them. Very often they are aware of their differences. 

My own two sons have told me that from a very young age they knew that they were not like the other children in their class. They knew that they were different. They could see it, and could feel it; it made them both feel very scared. They also both felt that they were being expected to be like their peers but trying just made them both ill. 

Their peers also knew that my sons were different. There were children who without even knowing how or why my sons were different did their best to make my sons ‘feel’ included. I will be forever grateful to those children. There were many more children who not understanding their difference but being fully aware of it, made their lives in school very difficult indeed. 

‘Over 40% of children with autism have been bullied at school. Bullying can happen to any child at any time, but children with SEN are particularly vulnerable. 83% of children with a Statement of Special Educational Needs have been bullied. For children with SEN such as autism, bullying behaviour often stems from the differences between them and other children in school — in the way they speak, look or act or how they are treated by adults.’ (Ambitious About Autism School Report 2012) 

Teachers are the people who parents rely on to facilitate acceptance for children with autism. Peer awareness needs to be built into our schools curriculum, as does teaching our children about themselves and celebrating their difference. 

Ignoring the difference, while subliminally or robustly trying to get a child with autism to walk in neurotypical shoes is making some of our children ill. There is, in my opinion, a heavy bias in some mainstream schools for children with autism to wear a cloak of normality. Aspiring to be normal or being heavily pushed in that direction is taking its toll on children with autism.

An alarming number of children with autism are being referred to CAMHS because they have mental health issues. 

The National Autistic Society ‘You Need to Know’ Campaign reported that 70% of children with autism also have a mental health condition.

Why is this? 

The ‘You Need to Know’ report also stated that 83% of the children first experienced mental health problems before the age of ten, and half before the age of five. 

Could this be because from a very early age children with autism are not being allowed to be themselves? 

How many schools truly accept a child with autism warts and all? How many take the time to tell a child with autism that they are just perfect the way they are, and that they do not need to change? How many schools try to actively make a child with autism feel good about themselves? Fitting in should not mean changing who you are. 

I realise that my view may be somewhat controversial but I liken what is happening to children with autism in some mainstream classrooms to the way in which we used to treat children who were left handed. 

Left-handed people live in a world dominated by right-handed people and many tools and procedures are designed to facilitate use by right-handed people, often without even realising difficulties placed on the left-handed. "For centuries, left-handers suffered unfair discrimination in a world designed for right-handers." Techniques such as slapping the hand and going so far as to tie it behind the child's back to prevent the usage of the hand during writing, eating and other activities, were even used. 

Children with autism live in a world dominated by neurotypical people and teaching methods and procedures are designed to facilitate use by neurotypical children, often without realising the difficulties placed on the child with autism. 

The implications of what is happening to children with autism who are growing up confused, frustrated, angry, overloaded and desperately striving to be someone who they are not, just so that they can appear to ‘fit in’, is having a negative and lasting impact on our children. 

Our children are losing their identities. They are being stolen from them, in many cases before they have even discovered they have an identity or been allowed to develop one, and even if we think we are doing this with the very best of intentions what we are doing to them is fundamentally wrong.

Earlier this year the Autism and Education Trust rolled out a competency framework for people working with children and young people from 5-16 on the autism spectrum. 

The Framework was developed by the Autism Centre for Education and Research (ACER) at the University of Birmingham in collaboration with consultants with expertise in autism. It is both an excellent tool and resource.

I was both heartened and saddened at the same time when I read the framework because much of what is included in the framework is a basic understanding of autism. And yet it is now 15 years since inclusion became a buzz word for our then Labour Government. 15 years is a long time and I would have hoped that it was long enough for every teacher in the UK to have a basic understanding of autism and yet it would appear not. 

There has been much written and many reports published aimed at making school make sense for children with autism, and yet progress is woefully slow and the number of children with a diagnosis of autism is rising. 

I am not sure that I can support inclusion for children with Asperger Syndrome and High Functioning because for far too many of them I do not believe that it works. 

I am not sure that mainstream schools are the right place for children with Asperger Syndrome and High Functioning Autism. Maybe we need to focus on these children being taught in small schools or units where the emphasis is on acceptance and teaching our children about themselves, and the things they truly need to learn to live an independent, happy and successful life.

Parents should at least have a choice of provision, and that choice should not be dependent on meeting a very strict criteria. 

The mistakes that we have been making for years are being reflected in the number of adults with autism who are in full time employment. Something is not working for our children and adults. Even within disability adults with autism are marginalised within employment. We need to start looking at how we can really make a positive difference to their lives. 

Acceptance is crucial. Only when we have schools that accept that children with autism have a genuine disability and differentiate their teaching methods accordingly, will we enable children with autism to be all that they can be.

Until then our children will continue to grow up not knowing who they are, and not wanting to be who they are. They will never know how to learn and achieve as themselves. They will never be all that they can be.

The outcomes that we push children with autism to achieve do not prepare them for mainstream life, employment and independence. 

Until we allow children with autism to be children with autism and start to respect their uniqueness and difference we will continue to fail these children.

We need to provide our children with a place within our schools where they can be themselves. Where they can flap, spin, grunt screech or do whatever they need to do to self regulate without other children looking at and laughing at them. 

They need a quiet room where they can access their thoughts and make sense of them before they go into an overload situation or start to shut down, a place where they can process all of the sensory information that they are being bombarded with. 

Thinking and doing in mainstream schools requires a radical overhaul, and so much more than basic awareness raising and training before they can hope to meet the needs of children with autism.

Let’s encourage children with autism to celebrate who they are and give them the time to find their inner self. Let’s stop making children with autism think that having autism is something that is ‘naughty’ or something that they have to hide. 

It’s time to stop stealing our children’s identities and to provide them with an education that EVERY child on the spectrum deserves.

I would like to thank the parents who have allowed me to use examples their child’s experience of inclusion in this paper.

Carole Rutherford
Co-Founder and Core Group Member Act Now For Autism
Co-Founder Autism in Mind.