Sunday 1 February 2015

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:
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".

Saturday 25 October 2014

Don't Forget To Change Your Clocks Tonight!

Don't forget we get an extra hour in bed tonight - in theory!

Friday 28 March 2014

It is Spring!

Don't forget the clocks go forward 1 hour on Saturday night/Sunday morning. 

SPRING forward! 

Friday 28 February 2014

An Avoidable Death.

Mark Wood was 44 years old and weighed only 5st 8lbs when he died in August last year. Mark had Asperger's Syndrome, phobias of food, pollution, paint fumes, and social situations, and cognitive behavioural problems.

In January last year Atos Healthcare ruled that Mr Wood was healthy and able/fit to work. Following his assessment, in about April last year, Mr Wood’s Housing Benefit and Employment Support Allowance were stopped by the DWP, leaving him with just Disability Living Allowance as income.
Mr Wood had been these benefits (and DLA of £40 a week) since living independently from 2006.

We have been campaigning for advocates for every autistic adult who is applying for benefits or needs to be reassessed since July 2010. Our early findings from a survey regarding the outcome of advocates being used from the first point of contact from the DWP suggested that 3 out of 4 adults who had an advocate to help them to fill in their ESA 50 Questionnaire, are not being asked to attend a face to face assessment.

Having a suitably trained advocate who has a good understanding and knowledge about autism, available to adults with autism has underpinned our campaigning efforts now for almost 4 years, and has been at the very core of our campaign.

  • We have raised this issue with Ministers in writing on numerous occasions. We raised the issue with Chris Grayling, Maria Miller and Esther McVay. Carole Rutherford (our national co-ordinator) spoke to Maria Miller and Norman Lamb in person at All Party Group meetings for both disability and autism, about the about the urgency for advocates being offered to every adult with autism.
  • We have raised the issue of advocates with the DWP via Professor Harrington’s consultations and reviews of the Work Capability Assessment.
  • We have raised the issue of advocates during the adult’s autism strategy review. Less than two weeks ago we wrote again to Minister Norman Lamb about the need for advocacy to be included into the autism strategy for adults:
“When the autism strategy was rolled out in 2010 adults with autism were not being asked to account for themselves in face- to-face benefit assessments in the way in which they are now.

A revised strategy is urgently needed to reflect the impact that benefit assessment and reassessments are having on adults with autism.

Advocacy, and not being able to access a suitably trained autism advocate enabling an adult with autism to communicate effectively during an assessment, remains one of the biggest concerns for Act Now for Autism.”

  • Anna Kennedy even raised the issue of advocates with David Cameron in person and via a letter handed over to him while she was visiting Number 10 Downing Street last year:
In a response from Esther McVey and not David Cameron, some months after the letter was handed over, Ms McVey turned down an invitation to meet with us and stated that adults with autism could choose to have someone with them who they trusted or who knew them well, when they went for a Work Capability Assessment.

The Work Capability Assessment process to get Employment Support Allowance begins weeks, and in some instances months, before the face to face assessment takes place. Having an advocate who understands autism while filling in the ESA 50 questionnaire can make a big difference to the outcome of the assessment process.

Today we are both shocked and saddened by these headlines and story in the Oxford Mail:

A "VULNERABLE and fragile" man starved to death four months after most of his benefits were stopped and he was left with just £40 a week to survive on.

His GP Nicolas Ward told yesterday’s proceedings: “He was an extremely vulnerable and fragile individual who was coping with life."

“Something pushed him or affected him in the time before he died and the only thing I can put my finger on is the pressure he felt he was under when his benefits were removed.”

Dr Ward, from Bampton Medical Practice, said he had not been contacted by either Atos or DWP about Mr Wood’s medical history, and revealed that if they had asked for his professional opinion he would have said Mr Wood was unfit for work.

His mother Jill Gant said “He found it difficult to accept help from his family because he tried to live independently so he gave the money away. “He had a lot of problems, but he was very gentle and sweet.”
At the inquest, Mrs Gant said: “I think he died of the severe effects of malnutrition, but there were precipitating causes: 

“Extreme stress and lack of money caused by the removal of his benefits led to his eating problems, and malnutrition led to his death.”

Some of us here at Act Now for Autism know personally from first-hand experience the full impact that extreme anxiety can have on eating and the well-being of someone with autism.

Although we cannot know for certain that an advocate would have made any difference, the sad death of Mark Wood has only strengthened our resolve to continue to campaign vigorously for an autism specific advocate for every adult with autism who is facing a benefit assessment or reassessment.

We are the only autism campaign group who has made advocacy one of our leading priorities and we will continue to do so. 

Our sincere condolences and thoughts are with Mark's family. 

(Picture from the Oxford Mail)

Sunday 16 February 2014

Letter to Norman Lamb MP & Minister for DoH

Dear Minister,

Next month you will publish a review of the English Autism Strategy. In the run up to that publication Act Now for Autism would like to make you aware of the reality of living with autism in 2014:  

On 13th March last year you attended an All Party Group for Autism meeting where you sai:

“We would never tolerate someone with cancer getting the wrong care or treatment…and we should not tolerate someone with autism or Asperger’s Syndrome getting the wrong care or treatment or not getting any care at all.”

In February 2014 there are far too many adults with Asperger’s Syndrome who are getting the wrong care, treatment or no care at all. We simply do not have enough professionals with the required understanding and knowledge of autistic disorders to make a difference to the lives of those living with the condition.

In January NICE published the Autism Standard (QS51) and stated that the quality of care for people with autism is poor and varies across England and there is a real variation in the type and quality of care that people receive with many autistic patients living with other conditions that go undiagnosed. Nice called for clearer standards to ensure consistent treatment across the country.

Local Authorities and Health Service providers continue to do nothing for some of the most vulnerable people in their regions. In the years since the Autism Act and the roll-out of the Adults Autism Strategy, there has been a great deal of talk about services and provision for people with autism, but almost no action.

Our supporters tell us that although their Local Authority does now have an Autism Action Plan, they continue to report back to central government that their plan is ‘in progress’.

Having a plan that has been ‘in progress’ for more than three years with no actual progress is a failure and just not good enough.

There has to be some way of accurately measuring the progress that Local Authorises have made and holding them accountable.

It was very positive that the latest self assessment sought to include adults with autism who you asked to comment about the performance of their Local Authority. Many of the adults who speak to us on a regular basis, who are active within their Local Authorities, were totally unaware that their Local Authority had been asked to have their self assessment signed off by adults with autism.

Concerns are being voiced to us by adults with autism and parents and carers, who are active within their local partnership boards and working groups, that meetings with their boards and groups are now very infrequent and are often cancelled at the last moment due to a high number of apologies. Assurances are being given to stakeholders that meetings will be held to amend draft action plans, only for them then to find out that the action plan has already been signed off.

The problems that people with autism face are real, and far from their quality of life improving over the last three years, for many services have been slashed or stopped altogether. With further cuts to come and changes to benefits, where does that leave them?

Autism does not fit neatly into any one box and because of this it has become a hot potato that is being passed from one provider to another.  It is in fact adults with autism who remain unsupported and in need who are at the end of the line. They are the ones left holding the hot potato.

Adults are telling us that without an assessment being carried out they are being told by social care providers that their difficulties are mental health related. How is it possible to come to that conclusion without an assessment being carried out? Adults who have communication and socialisation impairments are being asked to go into detail about their own condition and how it is impacting on their lives, with people they have never met or over the phone. It is simply not acceptable to expect autistic people to communicate their needs this way.

We fully understand that adults with autism can and do have mental health issues, however we are concerned that assumptions are being made by professionals who often lack a depth and breadth of understanding about autistic conditions.  

Mainstream mental health services are not equipped to deal with adults who have autism. Long standing diagnoses are being questioned by people within mainstream mental health creating increased anxiety for the adults who are trying to access support. 

Adults with autism are being told that there first point of contact for their difficulties must be their GP who will then signpost them on to the correct services for them. In 2009 a national audit office report stated:

“Four out of five GPs (80%) indicate that they require additional guidance and training to identify and manage patients with ASD more effectively.
Seven out of ten GPs (71%) do not provide specific ongoing support, monitoring or condition management for patients diagnosed with autism. “

In 2012 the National Audit Office published a report ‘Progress in implementing the 2010 Adult Autism Strategy’ in that report they concluded:

“Less progress has been made in improving access to social care assessments, personal budgets and diagnostic services in local authorities, which can all help adults with autism to access services and support.”

And that:

“Effective local services and support are crucial in improving outcomes for people with autism.”
There were many areas in their report which were marked as ‘not achieved’.

Not achieved.

Ensure that autism awareness training is available to everyone working in health or social care and work with partners to develop effective training modules which can be used by local authorities and primary care trusts to create local training programmes.

When the autism strategy was rolled out in 2010 adults with autism were not being asked to account for themselves in face to face benefit assessments in the way in which they are now. 

A revised strategy is urgently needed to reflect the impact that benefit assessment and reassessments are having on adults with autism. 

Advocacy and not being able to access a suitably trained autism advocate to enable an adult with autism to communicate effectively during an assessment remains one of the biggest concerns for Act Now for Autism. Another burning issue relating to the benefit assessment and reassessment process - who exactly are adults with autism meant to go to for supportive information about their condition? 

There are literally thousands of adults with autism who have seen no one in relation to their autism after being signed off from children’s services. Who can these adults turn to as a matter of urgency if they require supportive evidence? 

The assessment process is contained within time restraints making it all but impossible for adults with autism to access the professionals they need to enable them to produce supportive evidence. 

As we have already explained adults with Asperger 'sSyndrome and High Functioning Autism do not meet the criteria to enable them to access support.

During the last three years it has become clear to us that adults with Asperger's Syndrome are caught up in a truly vicious circle with no way of being able to get out of it. 

We need someone or some process to monitor and evaluate the progress of the autism strategy to ensure that progress really is being made. We also need to record outcomes.
Without these things being in place we are very concerned that when the next review comes along we will find adults with autism and their parents and carers with exactly the same as they have right now: NOTHING. 

We thank you for taking the time to read our letter.


Act Now For Autism  

Friday 10 January 2014


Today went sent our response to the independent review of Jobseeker's Allowance sanctions chaired by Matthew Oakley. (

To what extent do JSA claimants understand that when they are referred to a 'back-to-work' scheme (such as the Work Programme) their benefit may be sanctioned if they don't take part? 

Autism is a vast spectrum which is underpinned by communication and socialisation impairments. No matter where an adult with autism lies on the autistic spectrum they will have impaired communication and socialisation skills. Some adults with autism will struggle more than other to communicate effectively. One size simply does not fit all autistic adults.

While some adults with autism will understand that being sent on a ‘back to work’ scheme means, there will be many who do not fully understand what it means. 

One of the biggest issues for anyone who has autism is the ability to communicate effectively. Autism impacts on both expressive and receptive language. Unless the person who is communicating has been specifically trained to communicate effectively with someone who has autism we can never be sure that the person has fully understood what we are trying to convey. 

Stress and anxiety can and does impact on the functionality of someone with autism. When someone with autism is feeling extremely anxious and stressed they will try to extricate themselves from the situation that is creating their anxiety and stress as quickly as possible. That means that even if they do not understand what is being communicated to them, they will state that they do to enable them to remove themselves for that situation. 

To what extent does a claimant’s failure to meet their conditions arise from them not having a sufficient understanding of what is expected? Are there ways in which this could be made clearer to them? 

Even if an adult with autism has fully understood that if they fail to comply with the ‘back to work’ scheme some adults will be totally overwhelmed by the actions that they need to carry out to stop them from being sanctioned. The fear of being sanctioned, will be for some adults, be the very reason why they fail to function effectively which will then result in them being sanctioned. Anxiety is an integral part of autism and increased levels of anxiety impacts on the functionality of the person with autism. 

It is not just about making it clear to someone with autism, although that is of course important, it is about having people who understand autism assigned to that person to support them through the ‘back to work’ scheme. 

Parents are telling us that they themselves are acting as the adults support structure and to ensure that they comply with the scheme, so that they are not at risk of being sanctioned. This is placing a huge amount of pressure on parents and carers who have told us that they feel that it is they who are being sanctioned because they have adult’s children with autism.

Adults with autism who do not have a parent or carer to support them are finding themselves under increasing pressure to comply with the scheme and we are being told by some adults that their mental and emotional wellbeing then suffers, with some having to seek expert help.

Do sanctioned claimants understand why they have been sanctioned, and if not are there ways in which this could be made clearer to them? 

Again it is not just to do with understanding and it is not just about making it clear to people with autism. It is about having someone who understands the condition helping and supporting them through the sequence or process to ensure that they do comply with the scheme, and do not become so anxious about not fulfilling what they have to that they then fail. 

Do sanctioned claimants feel informed throughout the sanctions process, and if not how could their awareness be improved? 

The issues that adults with autism face while they are on this scheme have to be addressed before they reach a point whereby they are sanctioned. At the moment we are setting adults with autism up to fail because their condition, and how it impacts, is not being fully understood by the Department of Work and Pension. This is something that Act Now for Autism believes needs to be urgently addressed. 

The whole process could be improved for adults with autism if an advocate was made available to them. That person would be able to get to know the individual communication preferences of autistic claimants, thereby perhaps reducing sanctions.

To what extent are sanctioned claimants aware of the help available to them from Jobcentre Plus? For instance are they aware of how to appeal a decision or how to seek help through hardship payments? Are there ways in which this could be made clearer to them? 

Some of the adults that we have spoken to are not even aware that the JobCentre Plus has a disability employment officer. Of those who do, some are telling us that the disability employment officer has very little knowledge or understanding of their condition. 

Act Now for Autism has been calling for advocates for adults with autism to enable them to access the benefits/benefit assessment system since July 2010. Without the offer of an advocate adults with autism are being put at a substantial disadvantage to adults with other disabilities because of their impaired communication and socialisation skills. 

Adults with autism have problems with all forms of communication and that includes filling in the necessary forms to appeal a decision. The way in which to make the whole process accessible and clear for adults with autism is to make sure that there are autism specific advocates available to them who can support and enable them.

Act Now For Autism 

Tuesday 31 December 2013


We hope you all had a Merry Christmas and the holidays haven't been too difficult. 

Thank you for your ongoing support in 2013, and now here comes 2014! We wish all our supporters a very Happy New Year

Monday 23 December 2013

Merry Christmas!

We wish you all a Merry Christmas and hope you have 
a happy and peaceful time whatever you are doing.

Best wishes from all the Act Now for Autism team.

Friday 1 November 2013

Another postcode lottery, like we needed any more.

Last Friday the Department of Work and Pensions made an eleventh hour announcement that they are amending the timetable for inviting current Disability Living Allowance (DLA) claimants due to turn 16 to apply for Personal Independence Payments (PIP).
Given the concerns that Act Now for Autism has continually raised regarding the PIP assessment, and in particular the impact of a face to face assessment for anyone who has as autistic spectrum condition, the announcement should have been good news.

However, the whole process has not been paused. We are now facing a postcode lottery roll-out of PIP, which means that some children who are now approaching their 16th birthday will still likely have to endure a face to face assessment in the coming months. Any child who is living in Wales, the West Midlands, East Midlands, or East Anglia will still be invited to claim for PIP as their 16th Birthday approaches.

Some parents who had already received an invitation for their child to claim PIP have told us this week that following the announcement from the DWP they have received a letter from informing them that their child's DLA award will now continue for another 12 months before they can apply for PIP.

It is well documented and accepted by leading professionals that emotional age of a child with autism is often significantly different to their chronological age. We have already raised concerns about the morality of expecting a 16 year old with autism to endure a face to face assessment and we will continue to do so.

The prospect of their children being subjected to a face to face PIP assessment is creating an enormous amount of stress and anxiety for parent carers. Parents are telling us that their children simply will not be able to cope and account for themselves accurately such an assessment.

We are also hearing from parents who are extremely concerned that their children will not have the historical or medical evidence that we are constantly hearing will be required, before ensuring that a face to face assessment will not be necessary.

Autism is not considered to be a medical condition and there are now many areas across the UK where children are no longer seen on a regular basis by a paediatrician or a health professional who could supply up to date and in depth medical evidence about them. We know that some GP's are now delegating the job of filling in medical questionnaires on to their practice managers who do not even know the patients. Some GP's practices have even stopped filling in the questionnaire altogether as they simply do not have the time to do it and others charge a fee.

Once again we fear that anyone who has a diagnosis of autism is going to be placed at a significant disadvantage to someone who has a medical condition and are seen regularly by a health professional.

Monday 26 August 2013

Finally, a reply...

We would like to thank the Minister Esther McVey for responding to our letter dated 11th April via one of our founders Anna Kennedy. We are pleased to hear that she "greatly admires and appreciates the valuable work" that we do, however we are very disappointed that she is unable to meet with us to discuss the concerns we raised again with her about the PIP assessment process (and the WCA) for adults with autism.

We feel the response from the Minister has somewhat missed the point(s) we raised. While we are fully aware that adults with autism are allowed an appointee and encouraged to take a companion with them, during face to face assessments, this does not always happen. Also the very nature of the condition means that some adults with autism will simply not have anyone whom they can ask to accompany them to an assessment.

Here is her reply, apologies for the poor (and squint) quality! 

The point that we were hoping to convey is autism impacts on all forms of communication, including written communication. That is why it is essential that an autism specific advocate is offered at the first point of contact by the DWP, ATOS or JobcentrePlus.
We know it is the adults who have not had the support of an advocate, while they are completing their ESA 50 questionnaire, who are most likely to find themselves having a face to face assessment and then being placed wrongly in a Work Related Activity Group whilst facing the trauma of having to launch an appeal. 

The point we were hoping to make to the Minister is that the whole assessment process discriminates against autistic adults because they have a communication and socialisation impairment.

Once again we reiterated there are a significant number of autistic adults who do not have the historical or medical data they require for decision makers to make a decision as to whether or not they might have to have a face to face assessment. There are many adults who have been without services and provision after being signed off by Children’s Services. 

No services and no provision does not equal someone who is not in need support!

We know that autistic adults are at a distinct disadvantage to other people with disabilities in the current system simply because they have either been unable to access services and provision, or the services and provision did not exist for them to access in the first place. 

We are extremely frustrated that no one within the Coalition Government and DWP appears to be able to understand that adults with autism are going to find themselves discriminated against and disadvantaged throughout the whole PIP process, as they are throughout the whole WCA process.

We will write again to the Minister and continue to reiterate these points!