Saturday, 30 April 2011


Today marks the end of Autism Awareness Month - we're MARCHING ON!

ACT NOW is 'Marching on'
We're all in this together,
Standing up for Autism.
Will you stand up with us?
Keep up with us?
Join us?

"Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it's the only thing that ever has." Margaret Mead.

Friday, 29 April 2011

ACT NOW attended All Party Parliamentary Group Meeting on 27th April

ACT NOW core group members Carol, Anna and Mavourneen attended the APPG meeting on 27th April. The meeting was packed for this joint meeting with other APPGs including the APPG for Autism, Disability, Learning Disability and Eye Health and Visual Impairment.

The first half of the meeting was chaired by Charlotte Leslie MP(Chair of the All Party Parliamentary Group for Autism) but she had to leave halfway through and was replaced by Robert Buckland MP who is Treasurer of the APPGA and who himself has a child with autism.

Iain Duncan Smith did not attend but Maria Miller MP (Minister for Disability) did and spoke about the Welfare Reforms. She confirmed the Government will not be removing mobility component from people in residential care, it will be incorporated in the PIP roll out. 

Maria Miller took some questions and there was a great depth of feeling throughout regarding the level of anxiety being experienced by people with disabilities over the welfare reforms. Several people were very vocal in their dissatisfaction and anxiety. However, Maria Miller only attended for approx 30 minutes as she had another meeting to attend.

At this point a representative from MENCAP addressed the room followed by our Campaign Manager Carole who started her address by informing the meeting that she has two sons with autism. She said that her eldest son has a diagnosis of AS, which is deemed to be the highest functioning form of autism, while the youngest has a diagnosis of autism, and yet it is her eldest son who faces the most significant stress and anxiety in his daily life.

Carole gave an account of how her eldest son struggles to communicate and the problems that he has had accessing the welfare system. She also spoke of the anxiety and stress that her son was experiencing just knowing he has to have a WCA and how this is impacting on his mental health. Carole said that adults with autism do not 'do' uncertainty. Knowing that he will have to face an assessment but not knowing when is placing her son under a huge amount of stress. Carole also pointed out that her son had been without services and provision from leaving Children's Services when he was 16. She said that for 8 years her son had seen no one and that when his DLA was reassessed 3 years ago their GP could find no one in the North East  willing to see her son. Carole asked who could they call on to provide supporting evidence for her son after his WCA. Robert Buckland was visibly moved by what Carole had to say and went on to say her speech had been very powerful indeed.

Margaret Curran MP, shadow minister for Department of Work and Pensions spoke about the inadequacies of the welfare reform and her resolve to oppose many of the changes.

During the question time Mavourneen spoke about the ATOS assessment descriptors on behalf of ACT NOW and regarding Jobcentre Plus staff recently striking over being given a maximum of 16 minutes to carry out their initial telephone interview preceding any further assessment or questionnaire. She spoke about her son (who is 19) and explained it had taken her 16 years to get her head around his autism, so how can someone with possibly no knowledge of autism judge whether an autistic adult is fit for work/further assessment in less than 16 minutes.

Anna spoke about her two sons and stated that no matter what her sons had required from being diagnosed with autism the state had never been able to supply any of it. Anna said that she has learnt that if her sons need something she has to build it up from scratch and supply it herself. She said that she had been told her two sons were the only two boys with autism where she lived and yet when she opened her first school parents were queueing up for places.

Anna said that as her children had grown she had met the challenge of meeting their needs and has now opened two schools, a college and a residential home and went on to share that she had 3 hours respite removed from her youngest son when she opened her first school and was told that she no longer required respite because he now had a school placement.  Anna told the meeting that as long as she was alive she would continue to fight to meet the needs of her sons and also to help families within the autism community to help their children and adults because she knew that unless we did this ourselves it was not going to get done.

After the meeting Anna and Carole were told that Robert Buckland was impressed with what they had brought to the meeting and would be asking for a meeting with the Minister, himself along with Anna and Carole.

There was no doubt by the end of this meeting the depth of feeling about proposed welfare reforms, migration to ESA and use of ATOS assessments. We hope some of what was shared in the meeting has a deep impact on the people who count.

ACT NOW (Autism Campaigners Together)

Friday, 22 April 2011

Lots to do - we're MARCHING ON!

On Wednesday 27th April the All Party Parliamentary Group for Autism (APPGA) is holding a meeting in the House of Commons to discuss the Welfare Reforms. Iain Duncan Smith has been invited to attend. Carole Rutherford (our campaign manager) is an advisory group member of the APPGA has been invited to speak at the meeting - she has accepted the invitation. She will be speaking as a parent of an adult with autism who may be affected by the welfare reforms and will discuss the potential impact on her son’s life. Anna Kennedy and Mavourneen Moore will be attending this very important APPGA meeting on behalf of ACT NOW.

Anna Kennedy will also be attending the live Channel 4 debate on May 11th 'SPECIAL EDUCATIONAL NEEDS STATEMENT: IS A NEW APPROACH NECESSARY?' The new system aims to empower parents and remove unnecessary bureaucracy: however, will replacing statements give parents more control over their child’s care and development, or does it remove a supportive infrastructure that helps them navigate services and find the right help for their child? A panel of MPs including Sharon Hodgson (Education Minister) will debate this important issue.

Lots to do - we're MARCHING ON!

Wednesday, 20 April 2011

More support for ACT NOW - this time from the Catholic Church!

ACT NOW Core Group are delighted to confirm that we have had a reply from the Catholic Church in England and Wales via Caritas Social Action Network.

They have confirmed their support for our campaign and have contacted the DWP regarding the suitability of the WCA in its current form for people with autism. Here is an extract from their letter:

Many thanks for your letter to Archbishop Nichols, which was passed to me, regarding whether the Work Capability Assessment (WCA) format is suitable for autistic people. I share your concern at the current situation and support your efforts to address this vitally important issue.

In my capacity as Chief Executive of Caritas Social Action Network (CSAN) I have contacted the Minister of State for Employment, seeking assurances that no autistic people will be subjected to an assessment process that fails to fully appreciate their circumstances and needs. I have also requested confirmation that the concerns of autism charities raised during the 2010 WCA review will be taken into account and acted upon in the near future. I will of course forward a copy of any reply I receive.

Following consultation with our members I am pleased to lend CSAN’s formal support to ACT NOW and am happy for us to be listed on your website or in your literature as you see fit.

I hope this will assist your work and I wish you every success.

Yours Sincerely

Helen O’Brian
Cheif Executive
Caritas Social Action Network

We really hope the Church of England and Church of Scotland will come on board too.

Monday, 18 April 2011

Correction and apology to the National Autistic Society:

The National Autistic Society (NAS) has been in touch to make us aware of an inaccuracy in a letter written by Terry Rutherford (ACT NOW Area Co-ordinator for the North East of England) to the DWP, with a copy of the letter being sent to Julie Elliot MP.

NAS were made aware of our error by the Department of Work and Pensions.

The letter from Terry states:

"I am also very concerned about the current review being carried out by Professor Harrington. It is my understanding that the leading charities (the National Autistic Society, Mencap and Mind) have now unanimously dissociated themselves from the internal report This does not bode well for the recommendations in Professor Harrington’s report
which is due in the summer."

NAS have made clear to us that the Internal Review which was done by the DWP last year  is the review that they are were not happy with. The points in our blog about the descriptors apply to that review, which were opposed in parliament by the NAS.

NAS are supporting the Harrington Independent Review and believe it contains useful recommendations, which should make a difference. The NAS were asked asked along with Mind and Mencap to develop some recommendations to improve the WCA descriptors, which they have now done as part of their work with the DWP. Their proposals can be viewed here:

ACT NOW would like to apologise to The National Autistic Society for making such a mistake.

ACT NOW Core Group.

Sunday, 17 April 2011

Letter to Stuart Andrew MP from ACT NOW supporter in Pudsey, West Yorkshire.

Dear Stuart Andrew,

My brother, now an adult, has Asperger's Syndrome - he finally got his diagnosis at the age of 30 and it's been a huge relief to him, and myself and our mum, to know exactly why he is different from most other people and that we can at last start to help him understand how to fit in where he wants to, and importantly become more independent through employment.

I'm a supporter of the ACT NOW (Autism Campaigners Together) nationwide campaign. Last October they published an Impact Assessment Report to make clear the overwhelming concerns that parents, carers and adults with autism have regarding the proposed cuts and benefit assessments. 

The campaign highlights the huge amount of anxiety and stress that people with an autism spectrum disorder (ASD), and their carers have, when faced with going through assessment by the DWP or other bodies. It's like a test, a one-off chance to express yourself through a minefield of apparent bureaucracy, and I can totally understand this response.  

My brother underwent a Work Capability Assessment 2 years ago, and was refused ESA on the basis that he "seemed like a normal young lad" to the assessor. It's apparent that in its present format the WCA places people with autism and other complex disabilities at a disadvantage. It is not always apparent that someone with autism has a disability because autism can be a hidden disability and the needs of the person with the condition can fluctuate on a daily basis depending on their environment and levels of anxiety. It is often hard for sufferers to understand the nuances of what they are being asked, and they will often give the most basic answer they can think of, whether it applies to them fully or not, in order to relieve the stress and pressure of the situation. 

It is obviously very difficult for someone who has not been specifically trained in autistic spectrum conditions to effectively determine the impact that the disability has on the sufferer during a short assessment process - something that certainly was the case with my brother's assessor. It's a story I hear time and time again, that DWP assessors simply continue to misunderstand and make crude assumptions about autism and ASDs and how they affect sufferers.

It's probably worth noting that most ASD sufferers I know, including my brother, are desperate to find understanding employment and a chance of independence - they are most certainly not benefit scroungers but hard working, diligent, but misunderstood people. All they want is some help to find an employer who is willing to take a chance on someone who is a bit different and take the time to understand them - help  that my brother believes would have been more forthcoming had he been assessed by a properly trained person and been fairly assessed for, and granted, ESA. 

I am therefore writing to support ACT NOW's call for all persons suffering from an ASD to have access to an independent, trained advocate or communication assistant to help them interpret the initial assessment forms and paperwork, and to support them during the WCAs. This should be offered, in a way that the sufferer understands what is being offered and why, and what the consequences may be if they decline, at the first point of contact from the DWP when any application for benefits is made. This should also be offered where there is any review of the assessment or benefit entitlement. Advocate provision should be automatic on the basis of their autism diagnosis, and should be available to support the initial form filling process as well as any WCA or other interviews. 

It is also worth noting that many people with ASDs may not see themselves as needing help, as there is nothing physically wrong with them, and they may not have any insight into why having an advocate is essential, because they have such a narrow interpretation of things that neurotypical people would automatically assume to be obvious.

I am concerned that ASD sufferers are being disadvantaged by being left the the mercy of untrained assessors and a system that puts people with difficulties of interpretation and understanding at a severe disadvantage. Independent advocates should be provided irrespective of the sufferers' ‘apparent’ communication abilities - there is always more going on in the mind of an ASD sufferer than they are able to communicate succinctly.

I would be incredibly grateful if you could take the time to consider the issues facing adults with autism and ASDs, and, add your name to the ACT NOW National Call for independent advocate/communicators for every adult with a diagnosis of Autistic Spectrum Condition (ASC), by contacting them at They will also be happy to provide further information on the concerns of autism sufferers and their carers. 

I look forward to hearing from you at your earliest convenience.

Tuesday, 12 April 2011

Letter to DWP and Julie Elliot MP (from ACT NOW North East Co-ordinator Terry Rutherford)

Dear Ms Singh,

I am writing to you in response to a letter that was sent to Julie Elliot MP from Elaine Richardson, Acting District Manager Jobcentre plus, South of Tyne and Wear, following my contact with Julie as not only a constituent but also as a supporter of the ACT NOW Campaign of which I am now coordinator of the North East Region.

I believe that the Work Capability Assessment does not reflect the complexities of autism. In order to qualify for ESA in a work-related activity group the adult being assessed has to gain more than 15 points. The proposed change to the descriptors will have a detrimental impact on people with an autistic spectrum condition. The descriptors take no account of communication difficulties, verbal or non-verbal, due to mental impairment.

Making oneself understood is only covered by a physical descriptor, descriptor 6. Unless the guidance clearly states that this must also cover people who find it difficult to communicate due to a non-physical disability such as autism or a learning disability, how are these needs going to be recognised during the assessment?

Understanding and comprehension impairments are covered only due to a sensory impairment under descriptor 7, where the emphasis is on aids used by those with hearing or visual impairment. The wording of the descriptor itself is vague: it is based on an ability to complete two actions in the context of planning, organisation, and problem-solving. People on the autistic spectrum (even those who are deemed to be very high functioning and have university qualifications) often struggle with planning, organisation and problem-solving.

I am also very concerned about descriptor 17 regarding someone who might frequently have uncontrollable episodes of aggression or exhibit challenging behaviour, particularly when under pressure or in an environment with which they are really not familiar. This sort of behaviour would be unreasonable in any workplace.  Someone with these issues cannot realistically be assessed as not having limited capability for work.

Regarding the issue of training for the ATOS assessors, not everyone who has autism has an associated learning disability. This is something that is all too often overlooked when training is being carried out. Even where there is a learning disability present the autism will  play a large part in how that adult will present overall. There are many stereotypical misconceptions about autism banded about by many, including professionals. The ability to access vital disability benefits should not be based on stereotypes. Autism is a vast spectrum and it is difficult to believe that the complexities of such a vast spectrum can be successfully learnt in a self directed learning module in the form of a DVD.

I understand that the assessors themselves do not make any decisions regarding benefit entitlement. However the assessment tool which is being used to measure the functional capacity of adults with autism is flawed and it will be impossible for an informed decision to be reached. I have read a letter which was sent to ACT NOW by Chris Grayling which states that any evidence which is provided for adults with autism by GPs or consultants will be regarded as secondary evidence. Mr Grayling explains that GPs, consultants and medical professionals generally have not received the relevant training to enable them to assess the level of disability and how it is impacting on that person’s life. Yet people are being asked to accept that an ATOS assessor who has received their training via a self directed learning training module is able to score a person who has a complex condition like autism?

I understand that while some adults are being invited to bring someone with them when they attend their WCA the person who is accompanying them is often not allowed to speak. In fact I am aware of one case where the adult who had very limited communication abilities was told to stop crying and to look directly at the assessor and answer their questions. This is not what ACT NOW had in mind when they made a national call for advocator communicators.

I am also very concerned about the current review being carried out by Professor Harrington. It is my understanding that the leading charities (the National Autistic Society, Mencap and Mind) have now unanimously dissociated themselves from the internal report. This does not bode well for the recommendations in Professor Harington’s report which is due on in the summer.

Yours sincerely,

Terry Rutherford

Friday, 1 April 2011

World Autism Awareness Day 2011

ACT NOW is Marching ON! 

WE are very excited about our new video to mark the end of our 
virtual march on Facebook and the start of World Autism Awareness Day. 

ACT NOW supporters kindly gave us photo's of themselves or their children 
to help us promote awareness - everyone featured is affected by autism. 
We are very grateful to all, sadly we couldn't use all the photo's.


ACT NOW is 'Marching on'
We're all in this together,
Standing up for Autism.
Will you stand up with us?
Keep up with us?
Join us?

"Never doubt that a small group of thoughtful committed citizens can 
change the world; indeed, it's the only thing that ever has." Margaret Mead.

The Show Must Go On!


The story so far... 
July 2010 seven like-minded people all living with autism joined together and formed Autism Campaigners Together ACT NOW.

October 22nd 2010 ACT NOW handed over an Impact Assessment which two thousand nine hundred and forty nine people had contributed to.

The Impact Assessment was handed in to No 10 Downing Street expressing the concerns of the six thousand supporters who had signed in support of the ACT NOW Campaign.

October 28th ACT NOW Phase Two Record the Cuts goes live.

January 2011 ACT NOW opened 13 Regional Group including a group in Scotland, Wales and Northern Ireland. We now have 22 Regional Coordinators recording the cuts to services and provisions and sharing information on the Regional Groups.

January 26th ACT NOW met with Jon Cruddas MP (who agreed to become our Patron) and Jonathan Rutherford.

February 9th Phase 3 of the ACT NOW went live and we issued a national call for all adults with autism to be offered an independent advocate/communicator at the first point of contact and before any benefit assessment/review is undertaken.

ACT NOW is being supported by 45 Group who all work with and support families and adults living with autism.

We have the support of 20 MPs, 6 members of the House of Lords and 7 leading autism professionals from the UK.

March 28th ACT NOW met with Liam Byrne Shadow Secretary of State for Works and Pensions and his team to discuss the welfare reforms.

We launch our new video to mark the end of our virtual march on Facebook and the start of World Autism Awarenes Day. ACT NOW supporters kindly gave us photo's of themselves or their children to promote awareness - everyone featured is affected by autism - watch it on our Facebook page, website or blog. We are very grateful and received such a high volume we sadly couldn't use them all. 

ACT NOW is 'Marching on'
We're all in this together,
Standing up for Autism.
Will you stand up with us?
Keep up with us?
Join us?

"Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it's the only thing that ever has." Margaret Mead.

The Show Must Go On!