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! 

Sunday, 21 July 2013

Three Years On - Feeling The Impact.

We started our campaign three years ago this weekend and to mark the occasion we are releasing our new video ahead of our updated impact assessment (Feeling The Impact) in September.

We want to thank all of you, our 12,000+ supporters, across the UK for your continued support and for allowing us to use your images and words to aid in our campaigns for advocacy and better services for autistic people. 

"You've got the words to change a nation...if the truth has been forbidden, then we're breaking all the rules...
Let's get the TV and the radio to play our tune again, it's bout time we got some airplay of our version of events..."

Sunday, 23 June 2013

The Autism Show - Manchester

Carole Rutherford and Teresa Catto-Smith will be presenting the update to the Act Now For Autism 2010 Impact Assessment at The Autism Show.

Come and hear how people across the autism community in the UK are FEELING THE IMPACT on Saturday 29th June in The Hub, Theatre 2 starting at 11.20.

Book tickets here: http://

Monday, 20 May 2013

Feeling The Impact

Are you feeling the impact of the cuts to LA 
budgets or changes to our benefit system?
It’s not just about money, many parents and carers are being placed under extreme pressure because of the cuts to budgets and changes to benefits.

How are the cuts and benefit changes impacting on your lives? Have you lost any services or do you have to fight to keep them? Have any of your front line professionals left leaving fewer people to work with more families? Are you feeling the impact of the 'bedroom tax'?

We at Act Now for Autism are in the process of updating our 2010 Impact Assessment Report. Our follow-on report ‘Feeling the Impact’ will be launched at The Autism Show in Manchester on Saturday 29th June. 
Would you be willing to write a short piece about how the cuts or benefit changes have impacted on your life? We don’t need names but we need to know the LA region as we would like to cover as much of the UK as we can. 
If you could help us with our new report please get in touch via email: mail@actnowforautism.co.uk
Via our website contact form: www.actnowforautism.co.uk
Via our Facebook page (click 'send message'): https://www.facebook.com/actnowforautism 
Thank you

Tuesday, 30 April 2013


Is this really what our adults with autism have got to look forward to for the rest of their lives?

Have you ever read the book or watched the film The NeverEnding Story?

Bastian Bux a quiet boy who loves to read is accosted by bullies on his way to school. He hides in a bookstore, interrupting the grumpy bookseller. Bastian "borrows" a book, leaving a note promising to return it, and races towards school. He then hides in the school's attic to begin reading The Neverending Story.

The book describes the fantasy world of Fantasia which is being threatened by a force called "The Nothing," a void of darkness that consumes everything.

April 30th marks the end of Autism Awareness Month. A month that has seen some amazing autism awareness and acceptance blogs and events held all over the world.

Adults with autism and parents and cares have worked hard to improve the level of awareness, understanding and perception, that those who are not living with autism have about the multi faceted and multi coloured condition that we call autism.

So as we leave Autism Awareness Month behind us for another year, I decided to write a blog that I am afraid will paint a pretty grim picture of what living with autism, after the age of 16, can be like for young people and adults with the condition here in the UK.

I make no apologies for the title of my blog ‘The Nothing’ because for many post 16 children and adults with autism that is exactly what they have to look forward to. NOTHING!

In fact despite all of the fighting that parents do on behalf of their children, to ensure that they get a half decent education and that at least some of their complex needs are met, the sad truth is that with every year that passes far too many children are marching on towards ‘The Nothing’

Our Lives in your hands Ambitious About Autism. March 2013

“Less than 1 in 4 young people with autism continue their education beyond school.”
Transition Report APPGA - Effective and timely planning – 2009

“Many young people with autism often find that planning for their futures does not happen. Frequently, decisions about a young person’s next placement are made only when they are approaching the end of their schooling or, worse still, after they have left school. In the vast majority of cases where transition planning is taking place, it is happening without the involvement of adult social services. Contributors stressed how vital it is to address this. A recurrent theme was the mental health problems which developed, in part, as a result of these failures.”

Realistic yet stretching expectations – APPGA Transition Report 2009

For more able young people with autism, there is often insufficient understanding about the level of support they will require in adult life. Yet, for others, expectations may be too low meaning poor outcomes become a self-fulfilling prophecy. Transition planning must explore all areas where support may be needed to ensure young people with autism can reach their full potential in adulthood, including employment, independent living skills, relationship counselling, and leisure activities.

I Exist -  National Autistic Society 2008

Our research found that:

63% of adults with autism do not have the support to meet their needs

60% of parents say that a lack of support has led to higher support needs in the long run

33% of adults with autism have experienced severe mental health problems because of a lack of support

15% of adults with autism have a full-time, paid job.

Don’t Write me off – The National Autistic Society

A third of adults with autism are currently without a job or benefits, and many more struggle to access the right support to find a job or get the benefits they're entitled to.

National Audit Office Report 2009

There are few specialised employment support services for people with autism. A lack of understanding of autism is a significant barrier to gaining employment and more training is needed for those delivering employment support and those administering benefits.

National Audit Office Report 2009

Around 200,000 adults with autism do not have a learning disability. This group often fails to secure appropriate support, as health and social care services are traditionally configured for people with a learning disability, a physical illness or disability, or a mental health problem (which autism is not). Three quarters of local authorities said adults with autism who do not meet eligibility criteria experience or report difficulties accessing the services they require. Almost two thirds felt that current services for adults with autism are limited. Providing specialised support could improve outcomes for this group of people and their carers, and potentially enhance value for money, as the costs of establishing such support could be outweighed over time by overall savings.

Very little has changed since these reports were written, this is despite the fact that in England we have an Autism Act and a National Adults Autism Strategy "Fulfilling and Rewarding lives" There is nothing very rewarding about doing NOTHING.

Twelve years ago there was no transition planning for my eldest son and no support to ensure that he was both ready and able to seek and maintain employment. Twelve years down the road and there is no transition planning and no support to ensure that my youngest son is both ready and able to seek employment.

My eldest son has seen NO ONE related to his autism since leaving Children’s Services. He is 26 years old in July.

I spoke at an All Party Parliamentary Group (APPGA) meeting in March, where a room full of desperate parents of adults with autism ALL had the same story to tell. Our adult children have already been consumed by ‘The Nothing’ and we are all looking for a way out of ‘The Nothing’ into a much brighter place for them to live.

Norman Lamb, Care Minister was at the APPGA meeting where he said

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

He added that great progress had been made in getting the legal framework in place with the adult autism strategy and statutory guidelines but recognised that in many places on the ground, nothing really has changed.
The Minister added that the upcoming review of the strategy in April is a critical period for the Government to engage with parents and carers to provide a thorough analysis of where we are and what needs to change.

Speaking more generally about mental health, the Minister stated his own record in making mental health a top priority for the government’s mandate to the NHS commissioning board seeking parity with physical health by 2015.

Mr Lamb stressed that he was determined to make a difference in this area while he was Minister.

I, along with thousands of parents of adult children with autism, and adults themselves, really do hope that someone, sometime soon, will make a different, to end ‘The Nothing’ that is all that our adults have to look forward to.

I know how hard fighting our day to day battle for our children can be. I know what it feels like to run on empty. I know how frightening it can be when you have a child with autism, to look further down the road than next week or next month. But NEVER did I know how truly desolate and desperate I was going to feel living with one adult child with autism, and one adolescent where the only thing that I could be sure of for either of them was NOTHING

So PLEASE if you see anything posted about making life better for adults with autism, if you see anything posted about the autism strategy review where we are asking for comments or support, please support us. Even if you just add your name to whatever it is we are fighting or campaigning for then please do it. Your child with autism will be an adults with autism before you can blink.

Do not sit back and do nothing. Do not let 'The Nothing' be your child's NeverEnding Story!

Carole Rutherford
Co-Founder Act Now For Autism 

Friday, 12 April 2013

Can You Help Us Help the PM Understand Autism?

You may remember one of our founder members Anna Kennedy OBE gave the Prime Minister a letter from Act Now For Autism regarding our campaign for autism trained advocates during a conversation when she was awarded Tesco Achieving Mum Of The Year. Click here to read a transcript of their conversation. Click here to read the letter.

Below is the response Anna got from Prime Minister David Cameron and we're quite puzzled by it as he clearly didn't read the letter or in fact listen to Anna. It's also rather telling how little he knows about autism and the fear adults are living in because of the changes to benefits

What would you like us to say to David Cameron in response to his letter below? We want to hear from you so we can reply on your behalf  and on behalf of the other 12,000+ supporters of Act Now For Autism across the UK.

Comment below this post or email us at mail@actnowforautism.co.uk