Friday, 30 December 2011

Happy New Year!

ACT NOW would like to wish all our supporters a very Happy New Year!

We want to thank all of our 12,000+ supporters for continuing to back our campaign, for contributing by writing to members of parliament and local authorities and for sharing our content on Facebook. Without your support we wouldn't be where we are now. 

We really value all our supporters who regularly contribute by posting onto our regional Facebook groups and to our community page with their own stories but also are often there to support others posting on our pages for whom life is difficult. 

2011 was a tough year for people in the autism community across the UK. There has been widespread worry and fear about ATOS, the change from Incapacity Benefit to ESA and as we move into 2012 more worry about the impact of the changeover to Universal Credit and PIP. This all comes at a time when our money doesn't stretch as far given the recession and many are worried about keeping their jobs.

In March 2011 we launched a campaign video, ACT NOW are Marching On. We couldn't have released this video without the contribution of many of you, once again we thank you for letting us use the photographs you sent us. As we approach the New Year, we want to share this video with you again as ACT NOW (Autism Campaigners Together) is evolving and so we want you to know we are STILL Marching On

2012 marks a new beginning for ACT NOW - we will launch our new name (Act Now For Autism), website, logo and a forum will follow. This change will reflect our evolving role on Facebook but also retains part of our current name, which is crucial to continuing our campaign work. 

We remain committed to campaigning for trained autism advocates, better autism awareness for the PIP assessment criteria and assessors, better autism training for professionals associated with ATOS or the DWP and we continue to campaign hard for assessments to have descriptors fitting the often complex and subtle aspects of life and work with autism.

We wish you all a happy and peaceful new year. 

Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. (Margaret Mead)

Carole, Teresa, Anna & Mavourneen. (Core Group)

Saturday, 24 December 2011

Merry Christmas!

We want to wish all of our supporters a merry, happy, peaceful and calm Christmas and thank you for your continued support for ACT NOW (Autism Campaigners Together) and each other. 

Carole, Teresa, Anna and Mavourneen. (Core Group)

Sunday, 18 December 2011

A Roundup Of The Last Fortnight!

Firstly, we ask you to sign Pat Onion's petition (CarerWatch) - we know there are many petitions about just now but we have to keep momentum going: Stop and review the cuts to benefits and services which are falling disproportionately on disabled people, their carers and families.

We wish you all a very Merry and Happy Christmas!

Campaign Manager: Carole Rutherford
Administrator: Teresa Catto-Smith

PR: Anna Kennedy
Info Officer: Mavourneen Moore  

Friday, 2 December 2011


Roll up, roll up!

Professor Harringon published the findings of the WCA Year 2 Call for Evidence. (read it here: ACT NOW (Autism Campaigners Together) published a response to this report 3 days later - there is a lot of further work to be done and we are very concerned about the DWP continuing to stall the process of changing the descriptors further:

Reaction to George Osborne's Autumn Statement has been rather muted and sour - it does appear the rich will get rich and the poor poorer. Here are the key points of his statement:

More on poverty - the Governments 'anti-poverty plan is failing' was the headline of this Guardian article:

10 people were charged with abuse or neglecting patients after the horrific Panorama programme exposed the plight of some people living in Winterbourne View Home (now closed) 3 more people are still on bail pending further investigation:

 The Daily Mail reported earlier in the week that ATOS are planning to ban email communication as staff are spending too much time on emails which aren't relevant. We feel this is another barrier to effective communication for people in the autism community:

Keith Robertson from the Scottish Disability Equaltity Forum told MSPs some people are becoming suicidal even at the thought of some of the reforms in the UK Welfare Reform Bill - the Scottish Parliament has been looking at the welfare bill:

In a story which caused great concern just over 2 years ago, a father has taken the MET Police to the high court after seven officers pinned down, handcuffed and restrained then imprisoned his (then) 16-year-old son who is autistic:

And finally:

Channel 4 broadcast a special report called 'Revolving Doors' - it's worth a watch. "The number of appeals for ESA has quadrupled in 2 years, from 68,000 in 2009 to 240,000 by the end of this financial year. The cost to the taxpayer is staggering: £80m so far, and rising":

Have a great weekend!

Sunday, 27 November 2011

ACT NOW response to WCA Year 2 Call for Evidence Review Report

In September, ACT NOW responded to the Work Capability Assessment Year 2 Call for Evidence made by Professor Malcolm Harrington. Summarising our evidence we stated:

"ACT NOW believes that the assessment process in its current form does not reflect the complex needs of adults with autism."

We firmly believe that the descriptors do not reflect the complexities of the autistic spectrum. We also believe that tinkering with the descriptors will never be enough for adults with autism. This is especially so for adults who have Aspergers Syndrome or High Functioning Autism because they neither come under the mental health or learning disability heading.

We accept that adults with autism can have mental health issues and their condition can also fluctuate depending on their current state of health, their environment and any stress apparent in their lives at that time. Adults with autism also have sensory issues and can struggle acquiring knowledge by the use of reasoning, intuition or perception.

Autism does not sit neatly in any one descriptor - we will continue to campaign for autism to have its own descriptor.

On 24th November the Independent Review of the Work Capability Assessment – Year Two  - published its report.

ACT NOW is both astounded and deeply concerned that despite Professor Harrington and his review team being able to endorse recommendations (made by the NAS, MIND and Mencap) to improve the current descriptors and make the Work Capability Assessment a less stressful experience for adults with autism, the DWP have decided "that more work needed to be done to test and validate the evidence underpinning the recommendations".

Professor Harrington in his report is now recommending that "a gold standard review" is carried out, beginning in early 2012. Future decisions about the mental, intellectual and cognitive descriptors should be based on the findings of this review. The review also states that "robust evidence" will be required to implement any further changes - the sub-text being that to date there has not been sufficient evidence to support changes being made NOW.

This is not good enough, the DWP are stalling. As such, vulnerable adults with communication and socialisation impairments are to be measured by a yard stick that was never designed to measure their complex and specific needs. We know that plenty of evidence has been provided by all of the responding groups to the call for evidence.

ACT NOW would also like to highlight how difficult it is for adults with autism to share information about themselves accurately and also to different people, which is what they are expected to do already, often without an advocate. Face-to-face assessments where they have to discuss aspects of their lives will be incredibly stressful and on the basis of this review report, will continue to be.

The WCA (in it's current form) is not fit for purpose and will remain so for at least another 12 months. In fact, one 'conclusion' from the review is: "Inevitably, the whole process has been time consuming but the Review believes that positive changes are in the pipeline. A little patience would be valuable here from the critics, but a recommendation for year three will be to report, in detail, on progress using a series of agreed indices. For example, any reduction in the rate of successful appeals may be one indicator of change for the better although it is not the only one."

Disabled adults (and their families and carers) will therefore have no choice but continue living in fear whilst fighting hard to get benefits just to live day-to-day. Many adults with autism will have been assessed in that time, many incorrectly by a system currently not fit for purpose. The fact that the possible reduction in the rate of successful appeals is a possible measure of "positive change" through the WCA assessment process is appalling - it may actually be an indicator that less people bother to appeal via a system which in itself is not working properly or efficiently.

In the short-term there was agreement with DWP to consider the ESA50 form and whether it is possible to incorporate elements of the recommendations around frequency, severity and duration into this so that initial evidence from claimants allowed more informed decisions. There was also scope to consider changes to specific words or language used in the current descriptors by clarifying their intent or application to help improve the assessment.

To consider changes of course does not mean that any proposed changes to the ESA50 form are to be accepted. This form is proving to be very difficult for adults with autism to fill in without the aid of an advocate. The form itself is creating untold stress and anxiety for adults with autism. The results of this review have changed nothing.

ACT NOW continues to campaign for trained autism advocates to be offered at the first point of contact by the DWP.

"In the longer-term there was agreement of the need to build an evidence base to inform any future changes to the mental, intellectual and cognitive descriptors. This could take the form of a ‘gold standard’ review to establish evidence of the way in which the current descriptors are working and to test robustly the proposed descriptors to see if they would improve the assessment."

How long is "in the longer- term"? Will anything change before the majority of our adults have had to face the assessment? The review states: "An initial and constructive meeting about the ESA50 was held between DWP and the representative groups in October 2011. It was agreed that the representative groups would produce a suggested improved version of the ESA50. No timescales were agreed for this, although the expectation is that this will happen relatively quickly."

Broadly speaking the recommendations recognise that 10 per cent of the population have some form of problem with literacy and the ESA50 being a key part of the ESA claim, the Review agreed that this was something worth exploring in more detail. (Dyslexia is mentioned by name.)

There is no specific mention of autism, which affects all forms of communication.

More worrying is the finding that "There does not seem to be a significant group of claimants who were unjustifiably or inappropriately lost to the system." - we would suggest that many people are in fact lost to the system, they dropped out of it when they became adults and are now not know to even LA's. As such they have no trust in the 'system' so they may in fact not be claiming because they are too scared to.

ACT NOW feels that there is nothing in the review report that will positively affect the experience of the Work Capability Assessment any time soon.

We continue to be concerned about the lack of training about autism - something which does not appear in the review, despite the number of cases of adults with autism across the UK. Current statistics show that over 500,000 people have an ASD in the UK. We are unable to comprehend why an autism-specific descriptor(s) cannot be implemented.

Until there is an autism-specific section/descriptor within the WCA  instead of assessing adults with autism under the mental health and learning disability descriptors, this assessment remains not fit for purpose for claimants with autism.

We also question the effectiveness of any further input from the charities (in particular The National Autistic Society) while the DWP appear to be intent on stalling any kind of change that would directly improve the Work Capability Assessment for adults with autism.

ACT NOW has 12,000 supporters across the UK. That is 12,000 adults, parents and carers all living with autism, who do not hang up their hat at the end of the day, many of whom are living in fear. How many people will it take to make our voice heard - should we have a "little patience" or is it time to stop stalling and start listening?

Sunday, 20 November 2011


It's been a quiet few weeks for autism in the news but here's a brief round-up of recent headlines:

Bishops came out to criticise the Welfare Reform Bill - however, they really didn't go far enough as they stopped short of defending people with disability in their criticism:

The NAS issued a statement saying there have been 'new victories' following their campaign for adults with autism claiming of DLA (soon to be PIP) - as with the Bishops, we don't feel NAS have gone far enough:

 Citizens Advice Scotland have called on all political parties to re-affirm their commitment to the principles of the welfare state:

Keith Duffy has quite his high-profile role in Corrie to spent more time at home with his son and daughter, who is autistic:

Anna Kennedy highlighted the scandal of the bullying autistic children face in mainstream schools during anti-bullying week:

Peterborough County Council approved a new school for mainly autistic pupils:

Sadly Suffolk County Council announced £50m cuts, £15m to come out of the adult social care budget - this is very worrying news:

And to end on a positive note:

Rafa Benetez opened the new Wirral Centre, which will provide much needed support for adults and their families in the Wirral and across other counties:

More next week - we hope you've had a good weekend!

Sunday, 6 November 2011

Read all about it!

This week saw the broadcast of Panorama's "Britain On The Fiddle", which has caused much controversy. What did you think of it? If you missed it, it's still available on iPlayer:

Research in Tokyo discovered low levels of zinc in 2000 autistic children tested. British 'experts' said it is impossible to draw any firm conclusions from the research:

LBRB blog reported on a study in Sweden about the prevalence of autism in toddlers:

Surrey County Council have finally acted to help a desperate mother with her autistic son, who hasn't been in school after being expelled when his challenging behaviour got too much for teachers. He has a placement in a residential school and is currently being assessed:

The Scottish Government finally launched the Autism Strategy for Scotland. There's a long way to go and there is much of it open to interpretation. They also announced £13.5 million to back up the strategy - we hope that goes into front-line services - too optimistic? Strategy at a glance:

DYSPRAXIA AWARENESS WEEK - 5th to 11th November. To find out more about events and the condition itself, please visit the Dyspraxia Foundation website:

And finally some exciting news from ACT NOW!

We have decided our name no longer reflects who we are and how we are now evolving. So, we have decided we will change our name to Act Now For Autism - look out for our new name, logo's, website AND we'll be starting a forum in the New Year!

Friday, 28 October 2011


In the news this week: 
  • The Hardest Hit rallys took place all over the UK on 22nd Oct - go to their website for more information about how you can get involved in their campaign:
  • Anna Kennedy's new DVD Step In The Right Direction was featured on Tyne Tees news along with  James Hobley:

      Have a great weekend!

      Wednesday, 21 September 2011

      URGENT Call for Action!

      'Never fall ill, never grow old, never become disabled'   

      for if you do, not even Labour will speak up for you.'

      To all our supporters:

      The Labour party conference starts in Liverpool on Saturday. Labour were the architects of Employment Support Allowance and the ‘not fit for purpose’ Work Capability Assessment which is so stressful and traumatic it was linked to the suicide of claimants whilst Labour were still in power. They are the party of opposition but they are not opposing the Welfare Reform Bill as they should be. Labour seem to have forgotten that the 10 million sick and disabled people plus carers, friends and family in the UK have significant voting power. 
      It is time for us to remind Labour that they will not get our votes if they do not start to oppose the parts of the Welfare Reform Bill set to return sick people, disabled people and carers to a life of desperation, dependency, despair and charity.

      We are asking you to help with a mass email to key members of the Labour party to remind them of our voting power. Please include the following details in your email and send it to Ed Miliband, Margaret Curran (shadow minister for disability) and Liam Byrne (shadow minister for DWP). If you have time please also email it to any Labour MP and particularly any members of the shadow cabinet. We have provided a list of email addresses below.

      Please aim to send your email at 11am tomorrow (Thursday the 22nd September) If you can’t send the email at 11am, don’t worry, just please try to send it at any time between then and the end of Labour party conference on Wednesday 29th September.

      The email subject  should read: Your Silence Is Deafening

      We suggest embedding a link to this youtube video “The Sound of Silence” To embed the video into your email just copy and paste the link below.

      Then please copy the following text into your email:

      Dear (insert name here)

      10 million disabled people in this country plus their carers, relatives and friends are watching what your party do in relation to disability issues and wondering why you seem disinterested in trying to get our votes by opposing the savage attacks against disabled people being made by the Coalition Government. During conference season we wish to remind you, the architects of Employment Support Allowance, to 'never fall ill, never grow old, never become disabled', for if you do not even Labour will speak up for you.
      I support the ACT NOW (Autism Campaigners Together) campaign for autism advocates to be offered at the first point of contact by the DWP and also for compulsory autism training for ATOS healthcare professionals. Adults with autism are at a disadvantage right from the beginning of the assessment processes, which Labour introduced.

      (If you would like to add a short, personal message explaining to Labour how you feel about their lack of support for sick, disabled people and carers then please include it after the suggested text. You might also like to include a photo of yourself, or perhaps a photo of what disability, sickness or caring means to you. Don’t worry if you don’t want to personalise the email, sending the suggested text is fine) 
      (Insert your name)

      Please send your email to:

      Ed Miliband MP, Leader of the Labour Party
      House of Commons, London, SW1A 0AA
      Tel: 020 7219 4778
      Shadow Secretary of State for Work & Pensions
      Liam Byrne
      House of Commons, London, SW1A 0AA
      Tel: 020 7219 6953
      Fax: 020 7219 1431

      House of Commons, London, SW1A 0AA
      Tel: 020 7219 8102
      Fax: 020 7219 6656
      Shadow Home Secretary and Minister for Women and Equalities
      Rt Hon Yvette Cooper MP
      Shadow Chief Secretary
      Angela Eagle
      Shadow Secretary of State for Business, Innovation & Skills
      John Denham
      Cabinet Office and Minister for the Olympics
      Tessa Jowell
      Shadow Secretary of State for Communities and Local Government
      Caroline Flint
      House of Commons, London, SW1A 0AA
      Tel: 020 7219 4407
      Fax: 020 7219 1277
      Shadow Secretary of State for Culture, Media & Sport
      Ivan Lewis
      House of Commons, London, SW1A 0AA
      Tel: 020 7219 2609
      Shadow Leader of the House of Commons 
      Hilary Benn
      House of Commons, London, SW1A 0AA
      Tel: 020 7219 5770
      Shadow Secretary of State for Defence
      Jim Murphy
      House of Commons, London, SW1A 0AA
      Tel: 020 7219 4615
      Fax: 020 7219 5657

      Shadow Secretary of State for Environment, Food and Rural Affairs
      Mary Creagh
      House of Commons, London, SW1A 0AA
      Tel: 020 7219 6984/020 7219 8766
      Fax: 020 7219 4257

      Shadow Secretary of State for Education and Election Coordinator
      Andy Burnham
      House of Commons, London, SW1A 0AA
      Tel: 020 7219 8250

      Shadow Lord Chancellor, Secretary of State for Justice
      Sadiq Khan
      House of Commons, London, SW1A 0AA
      Tel: 020 7219 6967
      Fax: 020 7219 6477

      Shadow Secretary of State for Energy and Climate Change
      Meg Hillier
      House of Commons, London, SW1A 0AA
      Tel: 020 7219 5325
      Fax: 020 7219 8768

      Shadow Secretary of State for Health
      John Healey

      House of Commons, London, SW1A 0AA
      Tel: 020 7219 6359
      Fax: 020 7219 2451

      Shadow Secretary of State for Northern Ireland
      Shaun Woodward

      House of Commons, London, SW1A 0AA
      Tel: 020 7219 2680

      Shadow Secretary of State for Scotland
      Ann McKechin
      House of Commons, London, SW1A 0AA
      Tel: 020 7219 8239
      Fax: 020 7219 1770

      Shadow Secretary of State for Transport
      Maria Eagle
      House of Commons, London, SW1A 0AA
      Tel: 020 7219 4019
      Fax: 020 7219 1157

      Shadow Secretary of State for Wales
      Peter Hain
      House of Commons, London, SW1A 0AA
      Tel: 020 7219 3925
      Fax: 020 7219 3816

      Steven Timms MP

      Friday, 16 September 2011

      WCA Year 2 Call For Evidence - The ACT NOW submission.

      ACT NOW (Autism Campaigners Together) are a core group of people passionate about the future and wellbeing of children and adults with an Autistic Spectrum Condition in the UK. Everyone of the ACT NOW core group and our Area Coordinators live with autism 24/7. 
      ACT NOW is fighting the cuts to benefits, the benefit assessments, services and provision on the autistic community.
      We currently have over 10,000 supporters for our campaign and the number continues to grow on a daily basis.

      We have 14 Regional Groups, including a group in Scotland, Wales and Northern Ireland and 20 people coordinating those groups.

      We are being supported by 44 autism groups and organisations all of whom support families living with autism and adults with autism here in the UK.

      Our Campaign for advocate communicators/supporters for adults with autism who have to have a Work Capability or Personal Independence Payment, has the support of 20 MPs, 6 members of the House of Lords and several autism professionals.

      ACT NOW asked users of Facebook groups, pages and our blog and website to share their experiences of the Work Capability assessment. All information was used with consent in order for us to submit our evidence, which was collated by the campaign manager (Carole Rutherford) and edited by the campaign administrator (Teresa Catto-Smith):

      Question 1: Have you noticed changes to the WCA process as a result of the Year 1 recommendations? If so, what are these changes?
      A. Process has improved
      B. Process has broadly stayed the same
      C. Process has got worse
      D. Not noticed / not sure


      A B C D (delete as appropriate) and provide any written comments …
      The people who have contacted ACT NOW believe that despite the changes made to the WCA process as a result of the year one recommendation there has been very little (if any) improvements as a result. Although some people told us that the process has broadly stayed the same, others feel that it has become worse. 

      10 The Work Capability Assessment – A Call for Evidence: Year 2 Independent Review
      Further work needed

      The Year 2 review is engaged in a programme of work identified during the Year 1 review, but which that review did not have time to consider in detail.
      If recommendations from Year 2 are accepted and implemented they, in combination with the Year 1 recommendations, should help further improve the WCA process. However, this is a continual process of improvement and there are three further opportunities after this year to make further positive changes.

      Question 2: Are there further areas of work that you think should be added to the programme of work for Year 3? If so, what should these consider?
      A. Major areas of work required
      B. Minor areas of work required
      C. No more areas of work required
      D. Don’t know

      A B C D (delete as appropriate) and provide any written comments …
      The whole process of the WCA needs to be revised and reassessed for adults with autism.

      While constantly changing the WCA may make it confusing for claimants, representative groups, those delivering the system (both Jobcentre Plus and Atos Healthcare) and policy makers, it is currently a nightmare for adults with autism. The process is confusing and does not work for adults with autism because they have a communication and socialisation impairment. The assessment process is often carried out be people who do not fully understand how these impairments impact on the adult’s ability to communicate with them no matter how verbal they might appear to be.

      All forms of communication are affected by autism and that includes written communication. There is a lack of autism friendly information to help adults with autism to understand the process. They do not understand the intention behind the WCA and do not understand why they achieve a particular result because they find the whole process confusing and stressful.

      Whoever guides an adult with autism through the WCA process must have a good understanding of autism and must be able to communicate effectively with that adult. This includes adults with Aspergers Syndrome who often present as being highly verbal but who can experience significant difficulties in both expressive and receptive communication and organisational memory.

      All contact with an adult with autism must take place when there is someone present to help the adult to communicate effectively and to ensure that the adult has correctly understood the information being given to them.

      Simply explaining any process to an adult with autism does not mean that they have understood what is being said to them, because of the problems with communication it is unlikely that an adult would say that they have misunderstood the information. Even if they were asked outright if they had understood what they had just been told and they did not, the likelihood is that they would say that they had understood. Such is the complex nature of autism.

       Adults with autism can often find taking responsibility for something that is expected of them daunting and many adults with autism will require support to enable them to do so.

      Many adults with Aspergers Syndrome and High Functioning autism have been failed by the system and a great number of these adults are living unsupported and hidden within our communities. Many have had no provision or services after leaving Children’s Services. Asking these adults to gather corroborative evidence to support their case will result in a significant rise in their levels of anxiety. Unless they have the support of an advocate communicator or a support worker these adults will have no idea who they need to approach to find supportive evidence.

      It can also take months to access an autism specific professional and it is our understanding that it is not possible to put the WCA process on hold for months while an adult with autism sets about finding supportive evidence about their condition and how it impacts on their lives.

        Adults who are required to produce supportive evidence must be given access to a suitably qualified autism professional to enable them to provide any corroborative evidence about their condition that they are required to supply Atos with.

      Constantly changing the WCA may make it confusing for claimants, representative groups, those delivering the system (both Jobcentre Plus and Atos Healthcare) and policy makers. Whilst there is a need to make things better if they are not working as well as they could, there is also a need to be able to assess the impact of the changes being made and ensure that their impact is positive and as envisaged.

      Question 3: At what stage should we stop making changes to the system and let the changes already being made bed in to ensure they are having the desired impact?
      A. Don’t stop making changes until the process is considered theoretically perfect
      B. A few more changes are needed, but then pause to see their impact
      C. After Year 2 changes it will be time to assess what impact changes to date have had before making more
      D. Don’t know

      A B C D (delete as appropriate) and provide any written comments …

      Despite new scripts and letters having been designed to improve the telephone and written communications for WCA claimants, the leaflet that is currently available via Jobcentre Plus for anyone who has additional communication needs does not mention autism.

      Anyone with a diagnosis of autism has a communication impairment. The lack of written information that is presented in a way that is easy to understand for adults with autism must be addressed.

      Introductory telephone calls are not always a suitable medium for people with ASCs, many will not answer the telephone. Unexpected telephone calls can raise anxiety and stress levels if the adult is not expecting a call especially if there is no one with them to help them to communicate.

      Autism affects all forms of communication verbal and none verbal the ESA50 and ESA50A questionnaires are proving to be extremely difficult for adults with autism to fill in without the support or someone who has a good understand of autism and the adult.

      Adults with autism often take both verbal and written communications literally and are telling ACT NOW that the form does not allow them the space to go into the detail which they would like to be able to do about their condition. They feel that the questionnaire does not in any way reflect their condition and complex needs.

       ACT NOW has heard from adults who have supplied detailed information with their questionnaires only to be told that the information they have supplied is inadmissible. This is why adults with autism must have the unconditional offer of an advocate at the first point of contact by JCP.

      In the report that was published in November 2010 ‘An Independent Review of the WCA’ The report states that ‘46 per cent of claimants found the questionnaire difficult or impossible to complete, with this increasing to 57 percent for people with mental health conditions. Nearly half the claimants received help in completing the questionnaire, but around three in four people with problems speaking English or literacy problems needed help with it. Adults with autism do not fit into any of these categories - ACT NOW is being told on a daily basis how difficult adults are finding these questionnaires to fill in.

      It is often left to the person with autism to ask for additional help and the fact that they have impaired communication skills means that they often have real issues communicating their need for assistance.

      Adults with autism need to be given an automatic offer, on the basis of their autism diagnosis, of access to a trained advocate, supporter or “communication assistant” at the first point of contact by the Jobcentre Plus. This must to apply to all people who have an autism diagnosis, irrespective of their “apparent” communication abilities. It is essential that their communication difficulties and differences, their communication “styles” and their preferred methods of communication are taken into account and appropriate adjustments made and support ensured. If assistive technology is required then this must be provided before any test takes place. Without an automatic offer of support adults with autism are at risk of being discriminated against from the very beginning of the process.

      The process is very much a postcode lottery at the moment with some areas and professionals having received more autism awareness training than others. The adults and parents and carers who have contacted ACT NOW have stated that even when the professional involved have had autism awareness training it would appear that the training has been basic autism awareness training. Autism is a complex condition that requires specialist training.

      11 The Work Capability Assessment – A Call for Evidence: Year 2 Independent Review
      The face-to-face assessment
      1.    Much of the criticism about the WCA seems to relate to the face-to-face assessment carried out by Atos Healthcare on behalf of DWP.
      2.    Critics of the face-to-face assessment argue that it is impersonal and mechanistic and that claimants do not recognise themselves in the reports generated at the assessment. The Year 1 review also highlighted how the face-to-face assessment often drives the process and influences Decision Maker’s thinking, rather than being seen as a composite part of the evidence supplied by the claimant.
      3.    The Year 1 review therefore quite rightly recommended putting the face-to-face assessment in its proper place in the WCA process by placing Jobcentre Plus Decision Makers back at the heart of the process and ensuring that they have a range of information with which to make independent and considered decisions.

      Question 4: Does the Year 1 recommendation go far enough in placing the right emphasis on the face-to-face assessment?
      A. Does not go far enough – still too much emphasis on the face-to-face assessment
      B. Balance between the face-to-face assessment and the rest of the process now about right
      C. Goes too far – now too little emphasis on the face-to-face assessment
      D. Don’t know

      A B C D (delete as appropriate) and provide any written comments …

      Face to face assessments in an alien environment are proving to be a terrifying experience for adults with autism. Communicating with people whom they are not familiar with can be extremely stressful for someone with autism. Adults with autism do not always behave in a manner which an untrained professional would accept as being someone who is stressed and anxious.

      It is not unusual for a a person with autism to exhibit extreme stress and anxiety both before and after an event while not showing the extent of their anxiety during a stressful time for them. A stressed adult with autism could provide an assessor with an answer that they believe the person asking the question wants to hear. This does not mean that it will be an accurate answer to the question being asked.

      A very important factor is that adults with autism do not always understand themselves how much their disability impacts on their lives and although we realise that this makes an accurate assessment even harder to obtain it is a factor that we believe should be duly noted.

      The WCA is about functionality and not diagnosis or specific condition and disabilities. However unless an assessor is suitably and appropriately trained to understand autism they cannot hope to understand that the functionality of an adult with autism can fluctuate from hour to hour depending on the stresses in the life of that person.

      We understand that the training the Atos Assessors receive in autism is in the form of a self directed module compromising of a DVD on autism and learning disability. We firmly believe that autism is such a complex condition that impacts so differently on every person that the training Atos assessors currently receive is highly inadequate.

      Many adults have learned that the quickest way to escape from an experience or environment that is causing them great distress is to supply an answer to a question that will not lead to another question. Without having an advocate or someone who knows the adult well to facilitate communication the adult with autism could well be answering questions inaccurately simply because they want the questions to come to an end.

      1.    The Atos Healthcare face-to-face assessment still has a role to play in the process and so we need to ensure that this is operating as fairly and effectively as possible. To do this it would be helpful for the review to move beyond anecdotal evidence about individual bad experiences of the assessment to having more robust evidence about where any problems lie.

      Question 5: Do you have any robust evidence about the face-to-face assessment processes and outcomes which will help us make recommendations for future improvements?
      Please provide any written comments …

      ACT NOW knows of 12 adults with Aspergers Syndrome from one Authority who were all deemed fit for work after having a WCA. We also know of 8 adults in another Authority who were also deemed fit for work after a WCA. We have also drawn on the experience of the face to face assessments that other adults with autism have supplied us with.

      The people who support adults with autism and parents and carers have told ACT NOW how disgusted they were by the face to face interview process. There appears to be no consistent approach to the face to face interviews. It differs greatly from area to area. Some adults with autism have had to endure the WCA process twice in one year.

      One adult told his parents that he would rather die than have to ever have another Atos assessment.

      Some Atos assessors would not let parents and carers into the assessment room with their adult children.

      Some assessors did allow parents and carers or supporter in with the adult but then refused to allow them to help the adult to communicate effectively.

      Some assessors did allow the parent or carer to contribute to the process and allowed them to communicate or assist their adult child to communicate effectively.

      Parents, carers and supporters from all over the UK have told ACT NOW that their assessor appeared to have a very limited knowledge and understanding of autism.

      One assessor commented to an adult with autism that he ‘looked like a normal young lad’.

      The one thing that we have been consistently told is that the assessors appear to doubt the validity of the disability because the adult does not look disabled.

      One assessor became fixated by the way in which an adult with Aspergers Syndrome walked into the room that they spent much of the assessment time trying to undertake a physical examination to see why the adult was walking in that manner. It is not unusual for someone with Aspergers Syndrome to be poorly coordinated, or have an odd or bouncy gait or posture, poor handwriting, or problems with visual-motor integration. The assessor was clearly unaware of this.

      One adult who was severely traumatised by the experience was told by the assessor that they could not be anxious because they were not rocking back or trembling during the interview. 

      One of the most popular questions that the adults were asked was if they have friends. Adults with autism often struggle with the concept of a friend. One adult answered yes that they did have a friend when in fact the person to whom they were referring is actually their paid support worker.

      People with autism often interpret questions is a very literal way. Asked if they could go shopping one adult answered yes, however their parent intervened stating that her adult child was not able to go shopping alone. The parent told the assessor that even with someone with them her adult child would only go to shops where they sold items that were of interest to them. The assessor simply confirmed with the adult that they could go shopping.

      Not being listened to even when they were allowed to speak is something that parents carers and supporters who have contacted ACT NOW have stated.

      One adult was asked if they could cook a simple meal and said yes to the question when in fact they are only able to make prepare a snack where nothing needs to be cooked.

      Other adults confirmed that they could also cook a meal when what they could actually do was to heat a microwave meal having been ‘trained’ to do so.

      Some of the adults being assessed found the assessors difficult to understand. They also told us that they felt intimidated by the assessor and under pressure to say the right thing.

      One parent told us that they were not allowed to help their adult child to communicate. Their child was so distressed in the interview room that they were unable to speak. Despite not saying a word the adult was found fit for work.

      One parent was not allowed to speak for her non verbal child who was told to look at the assessor and answer the questions.

      One adult with autism who was struggling to respond to the questions was told during an interview that other people with Aspergers Syndrome were able to answer the questions when they were asked so should they be able to answer the questions.

      Another adult who has problems attending appointments and interviews on time because of difficulties with organisational skills and anxiety, which is a common problem for people on the spectrum, was told that other adults with Aspergers Syndrome could manage to turn up on time, so their excuse for not turning up for appointments was not valid.

      Some of the adults who have contacted us have said that they had to leave the interview room during the interview because of their high levels of anxiety.

      One adult was so severely stressed by the process that they had a series of absences (petit mal) during the process before having to leave the room in a highly distressed state.

      Adults have told us that when they read the account of their assessment afterwards they felt that some of the answers that they had given had not been properly understood by the assessor.

      Question 6: Are you aware of any concerns about the face-to-face assessment, and if so where have these been focused?
      A. HCPs approach and the way they carry out assessments
      B. HCPs understanding of conditions
      C. The report created during the assessment and the IT supporting the assessment
      D. All three of these
      E. Don’t know

      ACT NOW has heard numerous concerns about the way in which the assessments are being carried out.

      Adults with autism have found the HCPs difficult to understand.

      Some adults felt intimidated and under pressure to answer the questions

      The adults themselves and their parents and carers felt that HCPs expected their adult children to answer the questions without hesitation and parents felt that this was because their children looked ‘normal'. Comments were made to parents about the ‘normal’ appearance of their adult children.

      HCPs are not making reasonable adjustments for adults with autism. They do not try to alter the way in which they are questioning an adult.

      HCPs are dismissive of high levels of anxiety and stress because the adult was not presenting in a way that they believe people who are anxious and stressed present.

      There is very little if any understanding of the adult’s condition and very little if any understanding of the many comorbdities which can run alongside autism and how they interact and impact on autism.

      Generalisations being made about adults with autism and their condition.

      The report after the assessment does not always reflect the answered to the questions that the adults felt they had given during the process. Parents and carers also said this.

      A B C D E (delete as appropriate) and provide any written comments … gutted

      Question 7: If you have heard specific concerns about the IT supporting the assessment (i.e the Logic Integrated Medical Assessment or LiMA system), do you have any robust evidence about how this adversely affects the assessment or its outcome?
      Please provide any written comments …
      1.    Many people still believe the Atos Healthcare face-to-face assessment will be a medical examination rather than an assessment of their functional capacity. In reality a physical examination (as carried out by a General Practitioner or similar)

      13 The Work Capability Assessment – A Call for Evidence: Year 2 Independent Review

      is not always carried out and criticisms have been raised about conclusions being reached despite this.

      Question 8: Is there a need to present and explain the face-to-face assessment in a different way, making it very clear to claimants what it will involve and how a functional assessment relates to work capability?
      A. Urgent need to present and explain the face-to-face assessment in a different way
      B. A need to present and explain the face-to-face assessment in a different way
      C. Not sure whether there’s a need to present and explain the face-to-face assessment in a different way
      D. No need to present and explain the face-to-face assessment in a different way
      E. Definitely no need to present and explain the face-to-face assessment in a different way

      The face to face assessment for adults with autism is simply terrifying. It is difficult to successfully explain how distressed, anxious and in some cases suicidal these adults are feeling prior to the assessment.

      Communicating successfully with people whom they have never met and whom they are not familiar with, in environments that are often inaccessible to the adults because of their many sensory issues, is disabling effective communication.

      Adults with all forms of Autistic Spectrum Conditions (this includes Aspergers Syndrome) should have the option of having their face to face assessment by a professional who knows them personally.

      Failing this adults should only be assessed by a professional who has been specifically and appropriately trained to understand autism and its many facets and who is able to communicate effectively with the adult.

      A B C D E (delete as appropriate) and provide any written comments …
      Other comments
      1.    As stated in paragraph 14 this call for evidence deliberately asks more specific questions than the call for evidence last year. However, people may still wish to submit more general evidence and suggest specific changes that would make a positive difference.

      ACT NOW believes that the assessment process in its current form does not reflect the complex needs of adults with autism.

      We are aware that there will soon be new descriptors for the assessment and we eagerly await the new descriptors and hope that they will go a long way nearer to reflecting the complexities of autism and how it can impact on the lives of adults with the condition.

      Being fit for work is not the same as being ready for work. Because so many adults with autism have been failed by the state, often throughout their childhood, a large number of these adults will in no way be ready to work. There is now a great deal of evidence about the failure of the state education system and children with autism. Even for adults who do not have a learning disability the skills that they will require to actively seek and maintain employment will take a long time to learn and must be supplied to them by professionals who have the knowledge and expertise in autism to do so.

      ACT NOW has been told by several people that the groups who have been charged to supply the work choice and work programme for people with autism have very little or no expertise in working with autism, with some of the groups involved having received no autism specific training. ACT NOW finds it difficult to imagine how any group can successfully work with adults with autism without a good overall understanding and knowledge of their condition.

      Adults with autism will require a lengthy period of transition between not working and even seeking employment. Successful transitions have to be planned and the person with autism must be supported during the process of transition. The importance of transitional periods in the lives of children and adults with autism was the subject of an All Party Parliamentary Group for Autism  report  on the importance of transition and successful transitioning for children and adults with autism is also documented in the adults autism strategy ‘Fulfilling and Rewarding Lives’

      If adults with autism are found to be fit for work they will almost certainly not be ready for work. Adults with autism and their parents are carers are telling ACT NOW that there is no process in place where support is given to adults who find themselves in the WRAG and in the position of having to record their efforts to find work and to actively seek employment. Many adults with autism are simply not able to do this. They do not possess the organisational skills or the effective communication skills to do so.

      We are greatly concerned that many adults with autism will find themselves being subjected to sanctions because their disability impacts on their ability to carry out the procedures that being placed in the WRAG will require them to do.

      ACT NOW has heard from adults with autism, parents and carers who have requested a home visit while the WCA is carried out. Despite providing supportive evidence from GPs, Consultants and Support Workers a home visit has not been allowed.

      Adults have told us that despite including supportive evidence from a range of professionals with their ESA 50 questionnaire, following their assessment assessors are requesting more supportive evidence.

      Question 9: What one thing would you change about the WCA to make it operate more fairly and effectively?
      Please provide any written comments …
      We asked our supporters What one thing would they change about the WCA to make it operate more fairly and effectively?

      They were quite emphatic with their response which was that there are too many things wrong with the WCA to name just one that would make it fairer and more effective for adults with autism. However the vast majority did agree with the following suggestion that we put to them:

      Adults with all forms of Autistic Spectrum Conditions (this includes Aspergers Syndrome) should have the option of having their face to face assessment undertaken by a professional who knows them personally. This would reduce the stress and anxiety of having to be seen by someone that the adult is not familiar with in an environment that is alien to them.

      Failing this adults should only be assessed by a professional who has been specifically and appropriately trained to understand autism and its many facets and who is able to communicate effectively with the adult.


      ACT NOW (Autism Campaigners Together) are supported by the North East Autism Consortium: “Having read the ACT NOW submission about the process of Work Capability Assessments for people with autism, I am writing to offer the support of the North East Autism Consortium and its members.  I know that your campaigners have a mailing list of over 20,000 people and you have been collecting robust evidence over recent weeks.  The NEAC membership of local authority/PCT managers, social care providers and families are aware of the repeated concerns about the process of assessment which seems to imply people are “fit to work”.  As you know, the general consensus at our recent Regional Advisory Forum meeting was that being seen as “fit for work” does not necessarily mean “ready for work”.  There is clearly a lot of work to be done in this area and the NEAC is more than happy to support groups of people who are as passionate about the future wellbeing of people with autism.” (Pam Lawrence Project Manager NEAC)