NOTHING?

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