April 2nd was World Autism Awareness Day.  There cannot be many people in the UK who do not know someone who has an autistic spectrum condition.  

I think that the vast majority of us who actually live with autism would agree that an awareness of autism and its many facets would certainly make life easier for our children and adults, in oh so many ways. 
Just to be able to take a child to see a doctor without having to wait in a packed waiting room guaranteed to overload their senses would be a definite step in the right direction for many of us.

If you look up the word awareness in a dictionary you will find that the definition of awareness includes the words understanding, knowledge, grasp and appreciation.

Do we understand children and adults with autism?  The people, who come into our lives at the point of, or following a diagnosis, all too often do not have a good understanding of autism and how it impacts on the lives of the child, adult and indeed the entire family. If they did understand autism they would understand that you can’t give a child a block of therapy and six weeks later expect them to ‘fit in’ and act in a neurotypical way. They would understand that forcing a child to present in the same way as their neurotypical peers does not make them neurotypical and can have a lasting and damaging impact on that child.

How knowledgeable are the people who come into our lives? Do they know for example, that while a teacher might well believe that a child is ‘happy’ and comfortable while they are in school, that child explodes through the school gates doing a fair to middling impersonation of a Tasmanian devil, as soon as the school day is over because they are not comfortable or coping in school. Do they know that parents often spend hours helping their children to self regulate and stop feeling as if every fiber of their being has been invaded and torn apart at the end of every school day?

Do the people in our lives really grasp just how difficult it can be for children and adults with autism to function well in a world that has essentially been designed to meet the needs of neurotypical and none disabled people?  

If the people who come into our lives were autism aware and had depth of knowledge about the condition, they would grasp just how invasive autism can be and how you cannot turn autism on and off just to satisfy the neurotypical, none disabled world that we live in.

So do we appreciate children and adults with autism? Do we appreciate the ‘not so reasonable’ adjustments that we are constantly asking them to make to ‘fit into’ our world, day in and day out? Do we appreciate just how difficult it is for them to function in a room full of people who are all chattering and laughing at the same time? Do we appreciate the effort it takes for them to communicate effectively in a language that was never designed with autism-in-mind?  No matter what language it is that we speak. Do we appreciate their uniqueness? Do we appreciate and celebrate their difference?

Do we accept children and adults with autism for themselves?

Should we during April, Autism Awareness Month, perhaps be putting as much effort into accepting children and adults with autism for the wonderful, unique individuals that they are, and making sure that acceptance is an integral part of raising awareness of a condition that is now estimated could affect as many as 1 in 50 people. 

Acceptance does not mean that we do not support our children and adults and do everything that we can to be what they can be. Acceptance means accepting that they have autism and not trying to change them into someone they are not. 

Identity theft is a big issue not just in the UK 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 well-being 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 well-being 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?

Ambitious about Autism School Report 2012

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 (neutortypicals) 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.

Ambitious about Autism School Report 2012


5. Outcomes


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. Neutortypicals 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 well-being 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 well-being. Emotional well-being 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 full-time employment. 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 neurotypical 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 neurotypical 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.

http://www.aettraininghubs.org.uk/competency-framework/

 

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.

This paper expresses my own thoughts and opinions and is no way reflects the thoughts and opinions of either Autism-in-Mind or Act Now for Autism. 

I often talk about scripts and autism in the same breath. I  believe that children with autism rely heavily on scripted performance in their day to day lives. Scripts are learned and stored for many different areas of a child's life. There are scripts for home, scripts for school, family gatherings, activities, in fact almost everything that the child does on a regular basis requires them to learn a script. Without a script to refer to a child with autism is often lost, which is why visiting new places, with new people, in unfamiliar surroundings can create such anxiety.

It is that time of year again when children with autism begin to realise that they are coming to the end of their school holidays and will soon have to return to school. Children in Scotland have already returned to school.

We talk a great deal about the importance of transitions for children and adults these days but do we fully understand how difficult the transition from one classroom to another can be for a child with autism? Do we have any idea just how much they have to alter their sensory scripts in addition to their scripted performance, before they can even begin to feel comfortable enough to learn in a new classroom?

It is not just the classroom that they have to become familiar with although that in itself is a big issue for a child with autism. What does the classroom look like? Where will they be sitting? Are there things inside of the classroom that might jangle their senses and make it difficult for them to learn?

They also have a new teacher to contend with. What does their new teacher look like? What do they sound like? What do they smell like and will they wear clothes with a colour that a child might either become fixated on or hate? Who will be their new learning support assistant, if they have one? All of the sensory issues which apply to a teacher apply to a learning support assistant to. 

Then there is the unfamiliar fixtures and fittings in the new classroom. Will their new chair squeak? Will their desk rattle? Do the lights buzz? Is the carpet scratchy when you sit on it? Will the child they sit next to do things that increase the risk of a sensory overload?

Everything above can impact on a child's ability to learn. Everything on this list is something that has to be added to child with autism's sensory script.

A child does not only change their classroom. Where they hang their coat in the cloakroom changes. Where They sit in the hall for assembly changes. Where they sit in the dinning hall to eat their lunch changes.

Although a child may be doing all of these things in the same cloakroom, school hall and dinning hall the change of place where they hang, sit or eat will still alter the child's sensory profile significantly. They have a whole new sensory script to learn.

It can take weeks for a child to remember their new script and to learn how to cope with it. Schools often believe that a few photographs of a new classroom and a couple of meet ups with a new teacher means that the they have ticked all of the boxes for a successful transition. A sucessful transition can take weeks to accomplish, and even then it will only be possible to succeed if the child has the understanding and support of their class teacher, learning support assistant and dare I say classmates.

Most of us now know just how much sensory issues impact on the lives of our children. Schools still have a long way to go in their understanding of sensory issues and how they can impact on a disabled child's ability to learn.

No wonder some of our children explode through the school gates and into our homes. No wonder they need to retreat to their rooms with a familiar DVD or book to help them to soothe their jangling senses. No wonder they cannot answer our questions about their day and how they are feeling. When all of your senses are jangling it can seriously affect your ability to communicate.

Going into a new classroom with a new teacher can be difficult for every child. But when you add all of the sensory scripting that a child with autism has to add to the things they are expected to learn each day, it is not surprising that many of our children suffer from anxiety and stress on a daily basis, day in and day out.

I just wish that teacher training about autism included them having to spend  one day in an environment that was alien to them where their senses were tested to the limit. Maybe then we would see the level of understanding and support that children with autism require to enable them to both enjoy and achieve being given to them.

And yes I do know that we have some very good teachers who do understand. I would like to thank those teachers from the bottom of my heart.