Coalition Britain May 2010 – May 2015 How was it for you?

 

 ‘Yes this is ambitious. Yes it is optimistic. But in the end all of the Acts of Parliament, all the new measures, all the policy initiatives, are just politicians’ words without you and your involvement’.

So how involved have we been in the decisions that have been made for and about us during the last 5 years? 

Do you feel that we were listened to and involved? Act Now for Autism certainly don’t feel listened to. 

We wrote, we called, we campaigned. 

Carole Rutherford stood up and addressed a room full of MPs and people at an All Party Parliamentary Meeting for Autism in the House of Commons. Mavourneen Moore and Anna Kennedy spoke at the same meeting. Carole Rutherford sat next to two Ministers in two separate meetings and went into detail about the need for meaningful two way communication and support. 

Anna Kennedy spoke to David Cameron, face to face, about autism and subsequently made clear in writing, how we and thousands of others in the autism community felt, and how difficult our lives were becoming. 

We don’t feel listened to; we don’t feel that we were in any way involved. There was far too much happening about us, without us! 

For anyone living in England what about the 2010 English Autism Strategy ‘Fulfilling and Rewarding Lives’? Has it brought riches and fulfilment to your lives? Has the refreshed strategy ‘Think Autism’ made any difference to the way in which your Local Authority was implementing the Autism Strategy, or was it just more words falling an already deaf ears.

We want to know what you think. We want you to join in the conversation about what the priorities should be for people in the UK living with autism 2015. We want to hear from you and we want to involve you. We have had some thoughts about what those priorities should be and what we and you can do to make our voice heard. 

You can join that conversation her:https://www.facebook.com/actnowforautism
 
In 2010, 6000 people signed in support of our Act Now for Autism Campaign. 2923 people helped us to put together an Impact Assessment detailing how you thought the cuts to budgets and services would impact on you! In 3 months more people fed into our campaign than fed into the Brian Lamb inquiry about Special Education Needs over a two year period. 

We will soon invite you to take part in a conversation about our next campaign and what the autism community’s priorities are and should be during the next five years. We can’t do this without you.

Watch this space.

David Cameron said on 4th May 2010:
"And I want to say to British people clearly and frankly this; if you are elderly, if you are frail, if you are poor, if you are needy, a Conservative government will always look after you"

Professor Simon Baron-Cohen, director of Cambridge’s Autism Research Centre, said in January 2015: "the optimism brought on by the Autism Act has been diminished by a lack of spending".

Ignored and Ineligible.

Anna Kennedy OBE is a founder member of Act Now For Autism and has been awarded Tesco Achieving Mum Of The Year 2013. Celebrities gathered at London’s Savoy Hotel to pay tribute to the nation’s best inspiring mums, to be shown on Channel 5 on Mothers’ Day. (You can watch Anna talk more about her work and this award here.)

Anna went to No 10 Downing Street today as part of the Mum of the Year celebrations and put a letter from us directly into his hand, whilst challenging him: "Why does accessing services and suitable education and care have to be a constant battle for parents? What are the Governments priorities for autism? I then went to explain that when I knew I was coming to visit him I posted on my facebook page 'what would you ask the Prime Minister' and shared that within a couple of hours a 100 questions appeared. I said parents are anxious, worried , angry and some cannot see light at the end of the tunnel. Why are our children being penalised for having a diagnosis of autism? It would seem that local authorities are saying how can we make their lives more difficult?"

Here is our letter to David Cameron; this is part of our ongoing campaign for autism-specific advocacy to be offered at the first point of contact by the DWP for ESA and PIP applications and assessments/reassessments: 

Ignored, ineligible and unable to communicate effectively.

People with Asperger’ syndrome and High Functioning Autism (HFA) are amongst the most vulnerable and socially excluded in our society. Despite the Autism Act 2009 and the Adult’s Autism Strategy ‘Fulfilling and Rewarding Lives’ the majority adults with autism remain excluded from the care and work system. These adults are either ignored or ineligible and unable to access services, which often do not even exist, to support them and meet their
need.

They are also being discriminated against with many losing their benefits because they are unable to communicate effectively during benefit assessments and reassessments.

In 2001 the NAS reported that only 15% of adults had access to any sort of advocacy to help them express their own views about their choice of care, housing and activities.

In 2013 the need for autism specific advocates is even greater as adults with autism struggle to account for their own disability during the Work Capability Assessment and from April the Personal Independence Payment Assessment.

Without the aid of an advocate from the first point of contact for the Work Capability Assessment, adults with autism are being placed at a substantial disadvantage compared to other people with disabilities who are in the same situation as them. Furthermore the reasonable adjustments required to move this disadvantage are not made.

Adults with autism can struggle to communicate effectively about themselves in benefit assessment situations for two reasons: they have a communication and socialisation impairment which impacts on every communication they make and many do not fully understand their own condition and how it impacts on their lives.

Act Now For Autism asked 208 adults with autism if they would want an advocate to support them and to help them to communicate effectively during the Work Capability Assessment and also during a Personal Independence Assessment:

• 96% of these adults told us that they do want the support of an advocate to enable them to communicate effectively with a good understanding and knowledge of autism.

• 3% of adults said that they would want an advocate to support them to enable them communicate effectively.

• 1% said that they would not want an advocate.

People with autism who are non-verbal and have a learning disability will have great difficulties in making their needs and wants understood but tend to be accepted as needing advocacy which is often automatically available to them through statutory support.

It is often assumed that as people with Asperger’s Syndrome and HFA, who have average intellect and the ability to talk, are therefore able to fully and comprehensively communicate and state their view due to their verbal ability. It is this area in which people with Asperger' Syndrome/HFA are in great need of advocacy because although they can talk they are not always able to communicate effectively or adequately express their intentions or emotions.

The ESA 50 Questionnaire is long and difficult for someone with autism to both interpret and answer. Because adults do not always fully understand their own condition and this can mean that they are not accurately answering some of the questions in the ESA 50 about their functionality correctly or appropriately.

Many people with autism cannot work and most (according to research over 85%) of those even with Asperger’ Syndrome/HFA have never been successful in obtaining or remaining in employment; their benefits have therefore been a source of stability and a replacement for the lack of statutory support or autism specific intervention that they should have been able to receive.

We believe and are campaigning for independent advocacy to be offered to every autistic adult at the first point of contact by the DWP, regardless of their perceived work capability.

Adults with Asperger’ Syndrome/ HFA are now in constant state of crisis and alarm, they are desperate and anxious as even if they succeed in gaining ESA, they will soon be asked to complete the ESA50 again and then attend another assessment to see if their autism and fitness to work has improved. They also fear that, if the health professional or decision maker does not understand their disability, their benefits will be taken from them if the assessment is not successful.

It seems there is no end to this increasing cycle of assessments and reassessments in their current format for people with Asperger’ Syndrome/HFA and the implementation of PIP will put ever more stress and pressure upon autistic adults and their parents and/or carers.

It is essential to put in place robust advocacy services so some of the most vulnerable in society, can continue to rely on the benefits to which they should be entitled. Adults with Asperger’ Syndrome/HFA need as much and the same sort of advocacy as those who have autism and a learning disability, and this service is cost effective and essential for their mental and physical health and wellbeing. Advocacy is low level preventative support at its best and would save money by reducing appeals and tribunal costs.

We would be grateful if you could respond to this appeal with some specifics on how the above problems can be addressed.

In anticipation of your response

Carole Rutherford
Anna Kennedy OBE
Teresa Catto-Smith
Mavourneen Moore

Act Now For Autism Core Team

My Life With Autism - Employment

As part of our ongoing My Life With Autism series, one of our co-ordinators, who wasn't diagnosed with an ASD until he was 30, wrote this piece about some of his experiences in education, of adult life and employment. He wishes to remain anonymous: 

My years at school were not pleasant. I had always had difficulty interacting with my peers at school. I was well behaved on the whole but just didn’t seem to be the kind if guy people hung out with. Then just prior to starting secondary school the bullying started and it carried on and on and on and on.
I spent my most of my time in secondary school trying not to socialise in the hope that I would not attract too much attention and get living daylight kicked out of me. I did develop one or two safe friendships or at least to me they were but they turned out to be somewhat problematic. People change their minds very quickly they feared being made an outcast.

Why am I saying all this?

Well this view of relationships formed the basis for how I interacted at work later on and the problems I then had to overcome. What happens at this point in a child’s life affects how they will respond to situations that arise in the workplace. Anxiety is the autistic persons worst enemy, it will try and dominate their lives to the point of paralysis. More importantly the fear it produces will prevent them from achieving their potential in life and that is really is the point, isn’t it?

Between finishing school and starting college I took a summer job (my first full-time job). It was somewhat nerve racking as I had little or no idea what to expect. I discovered very quickly that relationships in the workplace were often quite complicated. Just because someone was being nice and polite, didn’t necessarily mean they liked you and more importantly I very little idea how to read people/situations and respond appropriately.

I struggled in college too, I was studying engineering and my maths wasn’t great. I had an interest in electronics, computers and I pursued it with vigour but all I really wanted to do was explore and experiment. As I’ve come to understand structured learning is a discipline and at that stage in my life I really hadn’t got it. When you can develop the discipline of structured learning it ceases to be an obstacle to your vision, your project, it becomes a tool to help you make things better. It can be a source of inspiration for ideas and the process of learning can become a pleasure rather than a pain. I look back on those years now, realise that it was one of the first pivotal point in terms of the journey I was on. The course tutor developed something of a dislike for me (he taught maths) and with my maths marks being low I was encourage to drop out after the first year. On reflection had I been persistent and perhaps re-sat the first year I might have had a much smoother ride but as it was I just rolled with it. And left feeling somewhat of a failure.

Many autistic people I have met over the years have told me similar stories. Autistic people usually think a little differently to most people, they focus only on what has value to them in terms of knowledge. It’s the project that’s important not simply knowledge for the sake of it. Many graduates come out of University with no idea what the really want to do. They have gone through the motions and met the requirements but where is the vision, the reason. Autistic people have vision they just don’t know how to get there, or they don’t believe they can. They are afraid to try.

I subsequently had a couple of different jobs. The second of these was as a Lab Tech. in a school which was really just code for a gimp (a sort of slave with no particular job description). As it turned out this particular school had an early RM network and very few members of staff who had any idea how it worked. I helped looking after it. I very quickly found myself being given all manner of technical equipment to figure out by staff who were not sure or didn’t have time. There was just one problem. I’d not been sanctioned to do it. This resulted due to my weak communication and conflict resolution skills, in me being bullied by an over zealous head teacher. I used the term bullied because it’s one thing to be told your in the wrong in some way and given chance to explain yourself. It’s another to be deliberately intimidated and unable to explain your actions. I don’t think I really understood what was going on at the time. I left with yet another failure under my belt. I had however managed to persuade my employer to give me day release to go back to college and try and converted my previous successful study to a different qualification. So I didn’t come away entirely empty handed.

Understanding the expectations of an employer is key to functioning well in a work place. Whether you choose to accept this or not, there is assumed knowledge and behaviour. Employers therefore don’t alway feel that need to explain how things should work, the chain of command, define responsibilities. To an autistic person this is a must. They need to know what is expected of them, the appropriate response when faced with uncertainty about what to do.
If there was one reason more than any other that autistic people find it difficult to hold down jobs it would be “lack of assumed knowledge”. If both the employer and employee have good clear method of communication (that works for both of them) and clearly defined and fully understood expectations from the outset there is no reason why an autistic person can not be valuable resource to their employer.

I shall resist giving a full CV here but I spent the subsequent 6 years working as an IT Technician moving between jobs building knowledge and learning, I had received no formal training thus far but by the time I left my final IT Technician role at Birmingham LEA’s Education IT in November of 1997 they had just recruited a team of IT Technicians for their Technician Service. When I arrived in December 1994 there was no LEA Technician Service. I was the first Technician and although I hadn’t realised the significance of it at the time. It was this innovative nature that would define my career.

This was the second key pivotal point in my career. By this time had begun studying with the Open University and I knew that I wanted to do something more than simply tech. support. I moved way from Birmingham to Northumberland, looking for some direction. Applied for Jobs but got no where. I was however spending most of my time exploring many internet related technologies which would form the basis of what I was to do later on.

It was at this point I made a decision. I wanted to be computer programmer. I had been programming as a hobby since I was 10 years old, I was 25 at this point. A chance online encounter with another OU student would give me that first step. He offered my the chance to code on a small project for a company he was contracting with in Birmingham. It was in a language I’d never worked with before but I didn’t care. Within a couple of months I was  back in Birmingham working with them full-time. I really did enjoy it but it was to be short lived, they had financial problems and had not been paying my tax forward. I now knew what I needed to do, it was time to move on.

I managed to get a place on clearing in the August and by September I was at University on a 2 year full-time HND. In the 13 years since then I have worked as a Web Developer for a variety of different businesses been involved in some great projects and some great moments of innovation (firsts).

I say all this because many autistic people believe that the obstacles to their successes cannot be overcome. That they can not develop sufficient social skills to cope in the workplace even though that may have the intelligence and in some cases nothing short of a gift in their particular area. I did have a lot of difficultly and I have made it sound a lot easier than it actually was to cope with at the time but I firmly believe that many of these difficulties could have been eased simply by having the right support.

I wasn’t diagnosed with an ASD until after my first post-graduate job (I was 30).
I’ve hinted at many of the reasons of autistic people being unemployed or seen as unemployable already but many of the arguments are I have heard even from autism specialist organisations all seem to miss one key point which is this:

It’s about the person not the job or the education system. You can have the best education system in the world but if the person doesn’t believe in themselves and the system doesn’t come along side support them with encouragement then it brings them no hope. If an employer doesn’t believe in the capability of a person they are employing and the employee doesn’t believe in themselves either how can it ever be a truly productive relationship.
Success is relative. 

As Einstein said, “Everyone is a genius. But if you judge a fish on it's ability to climb a tree, it will live it's life believing that it is stupid.” 

It’s more important to help an autistic person find the right path for them and encourage them in it than to push them down a path they can never reach their potential on. It’s a waste of their time and doesn’t benefit society or the economy in anyway.

There are many things the Government can do to support an Autistic young person through education and work placement but in the end the greatest reform needs to happen in business. Business sees employing people with difficulties more as a risk management exercise than an opportunity and improve their company. You don’t get gains in business without risks. There are many examples of autistic people who brought about massive leaps in innovation and discovery, yet if no one had listened we would never have known.

Call For Trained Advocates

Act Now For Autism supports the call for a Cumulative Impact Assessment of the Welfare Reform Act. The changes to benefits are falling disproportionately upon disabled communities across the UK and our particular concern is for those with hidden disabilities, like autism. We want to highlight our call for an autism-trained advocate to be offered to every adult with autism at their first point of contact with the Department of Work and Pensions:

When the changeover from DLA to PIP is rolled out in April adults with autism are looking at the prospect of having two face to face assessments. People with autism and Asperger's syndrome have difficulties with social communication and flexibility of thought. This includes how to understand and work out what another person is thinking or feeling by reading and interpreting body language, gesture and facial expression.

People with autism who are non-verbal and have a learning disability will have great difficulties in making their needs and wants understood but tend to be accepted as needing advocacy which is often automatically available to them through statutory support.

It is often assumed that as people with Asperger’s and High Functioning Autism (HFA), who have average intellect and the ability to talk, are therefore able to fully and comprehensively communicate and state their view due to their verbal ability. It is this area in which people with Asperger's/HFA are in great need of advocacy because although they can physically talk they are not always able to explain and express what they actually think or thought, intend or intended to do or emotionally feel or felt using the medium of speech.

Autism is a complex disability and anyone who acts as an advocate requires a good overall understanding of autism. There are very few advocacy services that are freely available to adults with Asperger's/HFA and even fewer advocacy services that have specifically trained advocates to support people with autism.
 Most adults with Asperger’s/HFA are not eligible for statutory services and cannot access advocacy groups for a range of different reasons. An advocate with a background in autism can explain the condition of Asperger’s/HFA when attending a benefit assessment with the individual. They can also write reports and support letters as even if the person has intellectual capacity s/he may lack the insight into her/his condition that the advocate can provide.

We are extremely concerned by comments being made by Esther McVay that most adults transitioning from DLA to PIP will have historical evidence which can be used to decide if they would require a face to face assessment. There are thousands of adults with autism who have seen no one about their condition since being signed off from Children’s Services. This is because autism is not deemed to be a medical condition and these adults have never been eligible for services despite their lifelong need. Many adults with autism will simply have no evidence to provide, historical or otherwise. This means that once again adults with autism will be placed at a substantial disadvantage because their disability does not fit neatly into a box.

PIP will require an adult to complete a questionnaire similar in style to the ESA 50 Questionnaire which is long and difficult for someone with autism to both interpret and answer. Autistic adults do not always fully understand their own condition and this can mean that they are not accurately answering some of the questions in the ESA 50 about their functionality correctly or appropriately.
Functionality is what matters, not what the specific condition the person has.

Case study:
Client B was found “fit for work” at an Employment and Support Allowance Work Capability Assessment; her benefits were stopped; amongst other statements she told the health care professional that she did “all her own cooking and meals”, so was assumed to be independent and work ready. B suffered needless anxiety and stress while waiting 6 months for the appeal and self-isolated during this period; she appealed the decision at tribunal with the help of an advocate’s report and presence where it was explained that her “independent cooking” was purely making toast and marmite for breakfast and microchips for her tea, as she ate little else. Due to her phobias no one else could touch her food. The advocate was essential for client B. ATOS Healthcare, DWP decision makers and the tribunal time and costs could have been saved plus the anxiety and stress endured by Client B if an advocate had been available at her Work Capability Assessment.

Many people with autism cannot work and most (over 85%) of those even with Asperger’s/HFA have never been successful in obtaining or remaining in employment; their benefits have therefore been a source of stability and a replacement for the lack of statutory support or autism specific intervention that they should have been able to receive.

People with Asperger’s/HFA are now having their ESA re-assessed on a regular basis and it can be removed, without much notice, by professionals with little experience of Asperger’s /HFA. People with Asperger’s/HFA look normal as it is a hidden disability, and their intelligence and ability to speak can often be considered to be “fitness to work”. The fitness for employment of a person with Asperger’s syndrome is assessed by first answering questions on the ESA50 form which expect some insight into their condition, which they many often lack due and secondly measured in the WCA by questions about “a typical day”. Their capacity to live independently and use a washing machine are scored rather than the challenges they face due to their inability to understand and process instructions, cope with colleagues, deal with change and inconsistency in a work environment, and manage their anxiety and stress levels.

We believe and are campaigning for advocacy to be offered to every autistic adult at the first point of contact by the DWP, regardless of their perceived work capability. 95% of adults with autism we asked said they would prefer to be supported through the benefit process by an autism-trained advocate.

Adults with Asperger’s syndrome/ HFA are now in constant state of crisis and alarm, they are desperate and anxious as even if they succeed in gaining ESA, they will soon be asked to complete the ESA50 again and then attend another assessment to see if their autism and fitness to work has improved. They also fear that, if the health professional or decision maker does not understand their disability, their benefits will be taken from them if the assessment is not successful.

It seems there is no end to this increasing cycle of assessments and reassessments in their current format for people with Asperger’s/HFA and the implementation of PIP will put ever more stress and pressure upon autistic adults and their parents and/or carers.

It is essential to put in place robust advocacy services so some of the most vulnerable in society, can continue to rely on the benefits to which they should be entitled. Adults with Asperger’s/HFA need as much and the same sort of advocacy as those who have autism and a learning disability, and this service is cost effective and essential for their mental and physical health and wellbeing. Advocacy is low level preventative support at its best and would save money by reducing appeals and tribunal costs.

Act Now For Autism
www.actnowforautism.co.uk

Written by Carole Rutherford (Act Now For Autism and AIM) and Sara Heath (Shropshire Autonomy)