Act Now For Autism is a core group of people passionate about the future and well-being of children and adults with autism and associated conditions in the UK.
Act Now For Autism are campaigning against aspects of the Welfare Reform Bill, specifically the WCA, Work Programme and the impact of the changeover to Universal Credit and PIP. We are ardently campaigning for advocacy to be offered to anyone who has to have a face-to-face assessment.
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'?
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
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.
book describes the fantasy world of Fantasia which is being threatened
by a force called "The Nothing," a void of darkness that consumes
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.
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
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
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
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
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
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
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
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
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
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
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.
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.
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!
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.