Monday, 31 December 2012

Marching Into 2013!

In July 10th 2010 Act Now for Autism took the first steps of a campaign journey that continues on into 2013. In this new year we will review the Impact Assessment we produced in July 2010, we want to know how and where the cuts and changes to benefits are impacting on lives across the UK.

We continue to believe that the WCA is not fit for purpose and in 2013 we intend to add our voice to the campaign for a cumulative impact assessment on the WCA and ESA.

2013 will be the year when we will all really start to feel the impact of the cuts and changes to our services and our entire benefit system.  The coming new year will see all the changes become a reality.

We will see the roll out of Universal Credit for new claimants, which will see the disability element cut. Families will feel the impact of the bedroom tax from April. People will begin to apply for PIP and move over from DLA, a new system and benefit that will include having a face to face assessment in addition to the face to face assessments that some adults with autism are already enduring as part of the ESA Work Capability Assessments.

Adults with autism must be offered access to an advocate at the first point of contact for both the WCA and a PIP assessment.

Changes to funding means that parents continue to fight to prove that their autistic children are disabled enough to warrant services and provision. Act Now For Autism fears that the changeover from statements for children with SEN to Education and Health Plans (England) will do nothing to improve this situation. In Scotland the rollout of the Getting It Right For Every Child strategy is causing concern as is the change to Self Directed Support.

2013 will be the year we must double our efforts - we will need your help. Autism continues to be misunderstood and under-represented. Even within the disability forum at large, children and adults with autism can be marginalised because autism can be a hidden disability.

The English Autism Strategy ‘Fulfilling and Rewarding Lives’ will be reviewed this year and that is something that Act Now For Autism will be taking a keen interest and hopefully an active part in.

The All Party Parliamentary Group for Autism has written to Margaret Hodge MP, chair of the Commons' influential Public Accounts Committee, expressing its concern about the limited progress being made in implementing the Autism Act 2010. Act Now For Autism shares those concerns. There is no level playing field and no national baseline for the implementation of the strategy. It is therefore difficult to measure any overall progress that has been made. We are concerned about the accuracy of monitoring the progress of the strategy within Local Authorities via a self assessment framework. Any assessment should include both service users and the views of those who have been unable to access services that they believe that they require.

We will be pressing hard for autism specific advocates to be given a high priority in the Strategy when it is updated. We believe that having access advocates for adults with autism has become essential and that need will increase again with the roll out of PIP.

We would also like to see much more in the strategy that would move progress towards the needs of adults with Asperger Syndrome and High Functioning Autism being met.

In Scotland the main focus will be the continuing implementation of the Scottish Autism Strategy, we also want to make sure autistic adults of all abilities are catered for. £1.12 million was made available to local authorities to develop strategies and action plans. Local autism co-ordinators are mostly in post now and the strategy continues to be monitored. We will be pressing for autism specific advocates in Scotland too and more robust measures in place for transition into adulthood across the country. We also would like to see better use of the Additional Support for Learning legislation and for the Getting It Right For Every Child ethos to provide better focus on the individual needs of autistic children.

In Wales there was a consultation earlier in the year to further implement the All-Wales Autism Strategic Action Plan strategy. Much criticism was leveled at current support mechanisms like the Community Care and Unified Assessments, as well as CAMHS, CMHT and social services who were felt to have not had either the investment nor the proper training (we know this is an issue across the wider UK too) to fully support all people on the spectrum appropriately. 

There has been some success in Wales but it's time to listen to the concerns of those on the spectrum, individuals and families in Wales and to provide better basic support for life skills, employment/self-employment opportunities - the same can be said across the UK. 

On December 3rd The Northern Ireland Government launched a document for public consultation aimed at achieving improved outcomes, services and support for people with autism, their families and carers. We hope to be involved along with members of our NI regional group. There are major gaps in provision in NI and we need to increase pressure on the Government here.

2013 is going to a BIG year for the Autism Community in England, Northern Ireland, Scotland and Wales. Act now For Autism is committed to campaigning for the Autism Strategies across the UK to be improved and above all, to be more inclusive of all people on the spectrum and to be the very best strategies in the world!

We are going to need YOU to help us march through this year and continue our campaign work and update our impact assessment. Now is the time to be proactive, people across the country will now start to feel the changes and fully realise what is going to happen. 

We have to stick together, work together and shout together with one voice.

March with us!


Monday, 24 December 2012

Merry Christmas!

We know Christmas can be a very tricky time for autistic children and adults but we really hope you can enjoy a peaceful, calm and happy Christmas.

Carole, Teresa, Mavourneen and Anna xx


Thursday, 20 December 2012

My Life With Autism - ESA50

Continuing our series My Life With Autism, our campaign manager Carole Rutherford wanted to share with you her experience of completing the ESA50 form for her son when he migrated from Incapacity Benefit to Employment Support Allowance: 

"The Work Capability Assessment was the only thing that the eldest of my two sons with autism could talk about. We had to endure question and answer sessions about the assessment every time we sat down to eat our evening meal. This started in 2 years ago when my son realised that he would have to be migrated from Incapacity Benefit and onto ESA.

Despite not having any idea about what questions he might be asked my son had a practice run every day of what he would say in response to any question that he would be asked.

My son has Aspergers Syndrome. He also has Keratoconus, which is a degenerative visual impairment. He has OCD, multiple allergies, asthma, he suffers from headaches on a daily basis and has 3 separate skin conditions all of which become much worse when his levels of anxiety increase. He also has extreme sleeping issues. His body no longer works to a 24 hour cycle.

My son has never worked.

He stopped going to school after he was hit by a car while going to school in an extremely distressed state when he was 11 years old. He never returned after the accident. He never leaves the house on his own and even when with someone I can probably count on my fingers how many times he has left the house this year.

After weeks of incessant talking about a Work Capability Assessment, during which time his anxiety levels rose to a level that I could no longer ignore, my son decided that he did not even want to hear those words used in our house. He could no longer cope with even the thought of a face to face assessment with a stranger in a strange environment never mind talking about it.

I spent a year trying to access someone in mental health who could help to support my son. The fact that it took that long for me to find someone who was willing to see my son only underlined how isolated within our Local Authority my son is. There simply were no services that were designed to meet my son’s complex needs. Had he been diagnosed with autism we could have seen someone within a very short space of time, but his Asperger Syndrome excluded him from any services that we did have.

 It was one day back in July (2012) when we received the call from JobCentre Plus. After checking that I was in fact my son’s appointee the Jobcentre Plus adviser was happy to speak to me. I was informed that the phone call was being made just to make sure that my son had received a letter telling him that he was being migrated from Incapacity Benefit to Employment Support Allowance. He had not. I was then read the content of the letter. The letter was quite short and to the point; I was feeling increasing sick and anxious with every word.

I was told that an ESA 50 Questionnaire would follow our conversation and I requested that everything for that point be addressed to myself and not my son. I was assured that it would be.
The ESA 50 arrived two weeks after the telephone call and even though I knew exactly what to expect having read the ESA 50 on numerous occasions on the internet, looking at it and knowing that every answer on that Questionnaire counted raised my levels of anxiety. And so it continued. I cannot remember feeling as anxious as I did at that point. My every waking moment was taken up by the ESA50 questionnaire and it was also the first thing I thought about the moment I woke up.

Answering the ESA 50 was a nightmare. Even though I knew that the questionnaire did not ask questions in a way that was going to make it easy for me to reflect the difficulties that my son has on a daily basis, trying to do just that was probably one of the hardest things I have ever had to do.  It took me three weeks to complete. This is despite being able to access support and advice about the questionnaire. My stress and anxiety levels rose on a daily basis. Just thinking about the questionnaire made my heart race and I spent all day and every day on a heightened state of alert.

The questions simply did not allow for the complexities of autism and I realised very quickly that they did not allow for the complexities of his degenerative visual impairment either.

Finding a way to clearly outline the problems that my son has functioning on a minute to minute basis, never mind on a daily basis, left me feeling mentally exhausted.  I found myself thinking about my answers to the questionnaire all of the time and going back and changing and amending my answers. I became totally obsessed with the questionnaire and found it difficult to focus on anything else.

Eventually I decided that I could make no better of the answers that we had given and so we sent the ESA50 to Atos.  I had read that it could take weeks to hear back following receipt of the questionnaire and it was difficult to keep a lid on my ever growing sense of ill ease.

My anxiety worsened because I knew that our wonderful GP was on holiday at the time the questionnaire was received and then became ill so the request from Jobcentre Plus to supply them with information about my son and his medical conditions would lie in his in tray.

I waited for the post every day and every day the sense of dread increased. I am currently waiting for an operation and I decided to ask if it could be postponed until we knew  the outcome of my son’s transfer from IB to ESA because I knew that there was no way that I could cope with my son if he had to have a WCA post op.

When news finally arrived it came via a small piece of paper that was attached to an ESA 3 questionnaire. The slip of paper read:

 ‘Dear Sir/Madam

As you have been placed in the ESA Support Group following conversion from Incapacity Benefit, you may qualify for Income Related ESA. To claim this complete and return the enclosed ESA3 form.'

The words ‘support group’ jumped off the page at me but as there was no letter with the questionnaire I was not sure that I dared hope that this was really about my son.

The new questionnaire was addressed to me. The day after the new Questionnaire arrived we got a letter confirming that my son was in the support group. It arrived on the same day as my youngest son’s DLA renewal forms.

It is safe to say that I personally heaved a sigh of relief but I also expected to feel as if an huge weight had been lifted from my shoulders, strangely I did not. Maybe because I know that it does not end there. My son will have to be reassessed again at some point in the future.  I also know that he could never handle this process on his own. He simply could not cope. I am not sure that I did.

I have spent the last two years campaigning for advocates to be offered to every adult at the very beginning of the WCA process.  I had an inkling of how difficult this process was for adults with autism and their families, from what I have heard and been told via Act Now for Autism. But not until I took the phone call from JobCentre Plus did I have any idea at all as to just how much the process was going to impact on me and my emotional well being.

If we had had a raft of medical evidence to draw on maybe I would not have felt as stressed out and anxious by the process as I did. But my son, like a great many other adults with autism, was cast adrift from services and support when he was signed off from Children's Services when he was just 16 years old. The whole process really brought it home to me just how much we are failing adults who have recognised communication and socialisation impairments.

Autism is not an illness but it sure as heck impacts on the lives of those living with it, so WHY are we still having to fight for the support and services that both children and adults need? WHY despite having an act of parliament dedicated to autism are our vulnerable adults not being protected and given the support that they desperately need when going into a benefit assessment situation?

As it stands at the moment the Autism Act and the Adults Autism Strategy 'Fulfilling and Rewarding Lives' is not ensuring that adults with autism are able to access the professionals and advocates they need to be able to access at a time when they are in most need."

Wednesday, 19 December 2012

#PatsDebate - The WRAG - A Ticket To Nowhere

From Carerwatch

+ PATS DEBATE – the WRAG – a ticket to nowhere

December 9th, 2012

ESA WRAG is a ticket to nowhere.
CarerWatch hope that Employment Support Allowance (ESA) will be put fully under the microscope for the first time in Pat’s Debate.

In particular that speakers will look at the Work Related Activity Group (WRAG) and tell the real truth about it.

The government should admit that the WRAG is not about finding work. The WRAG is simply about moving sick and disabled people from an unconditional benefit to a means tested benefit to save money.

Four fifths of sick and disabled people will be allocated to the WRAG on migration from IB. It’s becoming clear that ESA is an out of work benefit like JSA. It wasn’t protected from the inflation cap in the Autumn Statement. You are expected to find work.

It treats people as effectively fit and time limits them to a year before means testing. The feature that terrifies most disabled people is the coercion in the Work Programme with forced work placements and sanctions for non compliance. It is unfair to force these decisions on disabled people if you haven’t walked in their shoes.

The cover story is that these people are on their way to work when in fact only 1.5% of sick and disabled people are finding work through the Work Programme in the WRAG.

The WRAG is a confidence trick for moving to means testing disability support.

Can speakers in this debate be the first to be honest about this?

The heart ache over the WCA tests is really located in what the future holds when you are allocated to the WRAG.

ESA WRAG is a ticket to nowhere.

Already people are saying that after testing, failing, appealing, succeeding, retesting, failing, sanctions, Work Programme, when the means test is looming and they know they will not get any more support – they give up and drop out. 

Don’t let the people who give up and walk away count as people who disappeared and probably got jobs. They didn’t. They just gave up.

+ The WRAG is a JSA group

November 21st, 2012

Commenting on Professor  Harrington’s latest report the Minister for Employment, Mark Hoban, said:
“The WCA is the right process for determining who is able to work and who needs support. It is in everyone’s interest to make sure the system is as fair and as accurate as possible. ”

Once again the Minister is completely missing the point. The government has decided that four fifths of people who used to receive Incapacity Benefit are now fit for work. This has been decided not by tests but as a matter of policy. The tests are a fig leaf to legitimise this decision and present them with the news. The terms ‘fair’ and ‘accurate’ do not apply.
People who are able to work go on to JSA. People who are sick or have a disability are meant to go on to the Employment and Support Allowance but they don’t except for a minority who go in to the small residual ESA Support Group. Where do the others go? In to the ESA Work Related Activity Group (WRAG).
This is a trick. The WRAG is described as an ESA group but is in all but name a JSA group. There they will be harried by forced activity and sanctions and then timed out just like a JSA group. Effectively they are being required to work.
It would be more honest if the government stopped hiding behind a testing system and just announced that in future four fifths of sick and disabled people are now going to be treated as fit people.

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.

Saturday, 27 October 2012

Clocks Go Back Tonight!

Yes, Winter is here! Please don't forget 
to set your clocks back by 1 hour tonight!

Friday, 26 October 2012

Self-Directed Support Bill (Scotland)

The Self Directed Support Bill: 

A Once in a Lifetime Opportunity
The Self-Directed Support Bill is going through its parliamentary stages. Act Now For Autism supports the call by many carer organisations in Scotland asking MSP's to support the amendments being suggested. 
The need to recognise and fully support Scotland’s unpaid carers – who provide some £10 billion of care and support each year – has never been greater.  As our population changes, it makes economic sense to ensure that unpaid carers – who keep families together, who enable those they support to live the best quality of life possible – have greater rights to recognition and support.   

The current proposed provisions will not strengthen support and rights for Scotland’s 650 000 unpaid carers.  

This is a once in a lifetime opportunity to give unpaid carers some real rights and recognition.   

The amendments being proposed will strengthen the Bill.

Suggested Amendements: 

Section 1 - General Principles
The Bill, within its general principles, should fully recognise the key role that carers play in supporting disabled and older people in their own homes and communities.

The principles outlined in guidance for the Community Care and Health (Scotland)
Act 2002 recognise carers as key partners in care. Caring Together: Scotland’s
Carers Strategy 2010 goes further to state that carers should be seen as equal and
expert partners in the provision of care.

There should be a principle laid out in legislation will have greater strength and will ensure that the integral role that carers play is fully recognised and included, where appropriate, in the roll out of self-directed support:

Proposed Amendment:

Carers should be recognised as key partners in the provision of care, and should
have as much involvement as the person and the carer wishes in relation to:

(a) the assessment of the person’s need for support or services and,
(b) the provision of support or services for this person
(c) the provision of support or services to the unpaid carer (under Section 2)2”

In addition, Section 1 (subsection 4) of the Bill could be improved by legislating to ensure that local authorities are instructed to collaborate with any carer when undertaking an assessment and deciding what support to provide to the individual.  By making sure this action is taken from the outset, we can ensure that carers are fully involved. This would enable both the individual and their carer to be able to discuss what care the carer is willing and able to provide and what support the individual wants from their carer, if any. This also presents an opportunity to ensure that carers are identified earlier, offered a Carers Assessment and thereafter appropriate support. Moreover, this also ensures that an individual’s choice is not reduced.

This local authority collaboration with carers should also include young carers, including those aged under 16. It is essential and appropriate that the role undertaken by young carers is recognised, and that where appropriate, young carers are involved in discussions and decisions on self-directed support.

Section 2    A duty to support carers

Unpaid carers are a key part of the health and social care system. Not only is it cost-effective to support carers in the roles they do, it makes sense that they themselves have clear rights to support which can prevent them from suffering ill health and from being unable to continue caring.

Section 2 provides a power to authorities to provide support to a carer following an assessment completed under section 12AA (carers assessments relating to carers of those aged 18 or over) of the 1968 Act or section 24 (carers assessments relating to carers of those under the age of 18) of the 1995 Act.

We are concerned that enacting the legislation simply as a power to offer support to carers will result in further, significant variances in practice, and an inequality of service provision across local authority areas. If carers are to be truly recognised as key partners in care, they
require dedicated support that will assist them to continue to care and prevent their
health and wellbeing from suffering, leading to being unable to continue with their
caring role.

By legislating for a statutory duty rather than simply a power, this Bill presents an opportunity to deliver a limited right to some practical support. There is a strong economic case for supporting carers in this way. The Scottish Government has clearly acknowledged the preventative, economic and social benefits of supporting unpaid carers in their role in Caring
Together, Getting it Right for Young Carers and other strategic publications e.g.:

Carers are equal partners in the planning and delivery of care and support. There is
a strong case on human rights, economic, efficiency and quality of care grounds for
supporting carers. Without the valuable contribution of carers, the health and social
care system would not be sustained”

Providing small interventions and support at the right time can prevent crisis and
subsequent breakdown of care, and can prevent carers from having to give up paid
employment and wellbeing-enhancing activities that sustain their life outside caring.

3. Carers Assessments - The route to carers accessing self-directed support

Section 2 of the Bill sets out how adult carers will be able to access SDS.

As the Bill currently stands, an adult carer’s ability to access SDS is reliant on them
accessing a carer’s assessment under section 12AA of the 1968 Act or Section 24 of
the 1995 Act. This places a duty on local authorities to undertake a carer’s assessment only where the carer is providing substantial and regular” care. This provides no route to offer preventative support to carers with lower level caring responsibilities, nor does it recognise that the ability for a carer to continue to provide care may also be dependent on additional factors such as their age and health.

By limiting a carer’s assessment to those providing “substantial and regularcare,
many carers are prevented from planning for future requirements such as expected
changes in the cared-for person’s condition, emergencies, or transitions.

Evidence from many local authorities shows that there continues to be poor uptake of Carers’ Assessments across Scotland, with only a small number of carer assessments being carried out. By limiting carersaccess to SDS in this way, we believe that it will undermine the intention of the legislation to provide carers with a means of accessing personalised
support, at a time at which they need it, to enable them to continue in their caring

The draft Care and Support Bill currently at Westminster proposes creating a single
duty for local authorities to undertake carers’ assessments. It will replace existing law
(including the Carers Act 1995) and will remove the requirement that the carer must
be providing a substantial amount of care on a regular basis. This will mean more
carers are able to access an assessment, and that the duty is comparable to that for
the people they support. This is not the case with the proposed legislation in Scotland.

The aim of this assessment will be to consider the impact of caring on the carer and
to determine whether the carer has support needs and what those needs may be. It
must also consider other important issues, such as whether the carer is able or
willing to carry on caring, or whether they want to work.

The ability of carers to access SDS should not be dependent on them being able to evidence that they provide substantial and regular care.

The provision of carersassessments should be reviewed, with the aim of providing
carers with easy access to a more outcome-focused assessment process. The Scottish Bill could be altered to help improve this situation by removing the requirement that carers have to show they are providing regular and substantial care.  The wording of Section 2 should be  changed and the reference to Section 12AA of the 1968 Act removed. The ability of carers to access SDS should not be dependent on them being able to evidence that they provide substantial and regular care.

Without this change, we risk moving behind the rights for carers which will be applied in England. There is an opportunity for Scotland to lead the way.

4. Section 16      Charging

The proposed Bill will give local authorities the power to charge carers for the
services they are assessed as needing. We strongly oppose this. As key partners in care, and the largest contributors of care, it would be wholly unjust to charge carers for the cost of support which helps them to carry out their caring role.

Supporting carers to continue caring, which will help to prevent crisis and avoid costly intervention from statutory services, will be hindered by charging carers for the support they receive. This proposed approach would also lead to further inequality for carers depending on whether their local authority chose to charge for support - there would be no consistency across Scotland.

As carers who access direct payments may potentially only need relatively small amounts of money, to charge carers in this context is wrong and is likely to counteract any benefits gained from offering self-directed support to carers.


(With thanks to Lynn Williams, policy offer at SCVO, who wrote much of the text for this blog)