I Would Walk 500 Miles.

Co-Founder and Act Now For Autism Campaign Manager Carole Rutherford was invited to attend the All Party Parliamentary Group for Autism, chaired by Robert Buckland MP today at the Houses of Parliament.

Carole was invited to talk about her own personal experiences and as she works very hard in the Sunderland autism community with her support group Autism-In-Mind as well as the Act Now For Autism campaign, she took the opportunity to raise the issues we're campaigning about. Issues affecting her own sons as well as the many families and autistic adults she supports in Sunderland and across England.

Carole gave Norman Lamb (Minister for State and Care Services) a dossier of the work central to our campaign. This included our recent survey of autistic adults about advocacy, the letter Anna Kennedy gave to the Prime Minister last week and the piece written for us by one of our co-ordinators who has experienced struggles in employment. 

Sadly the minister was due to attend for only 30 minutes (he was there for nearly an hour) so Carole was only given 5 minutes speaking time: 

"I would walk 500 miles:

By the time I arrive home tonight I will have traveled 500 miles, 500 miles to have 5 minutes of the Minister’s time, for which I am most grateful. 500 miles is quite a distance to travel for 5 minutes of your time. These are the actions of desperate woman.

I am Carole Rutherford and I have two sons with ASC. My eldest son David, who is 25 years old, has a diagnosis of Asperger's Syndrome (AS). My youngest son Matthew is 15 and has a diagnosis of High Functioning Autism (HFA)

David has been without services from being signed off from Children’s Services when he was 17. This was despite David suffering two breakdowns during his teen years.

Ignored and ineligible

David's diagnosis of AS has totally prevented him from accessing any services or support.

Services Do Not Exist

The truth is that the low level preventative services which my son desperately needs to access simply do not exist.

Despite my sitting on my LA local autism working group/autism partnership board, and despite there being much talk about autism since the group was set up, nothing has changed for adults with

AS/HFA where I live.

Since being without services from the age of 17 David has developed a serious sleeping disorder. He also developed OCD which impacts greatly on his life.

I tried unsuccessfully to access mental health services for David for over two years. Because David does not have a learning disability we could not access a mental health team who had any knowledge or understanding of autism. Although the adult mental health services team were willing to see David, they did not feel that they were equipped to deal with his complex needs.

A little bit of knowledge is a dangerous thing

We need specifically trained professionals right across the services, especially within mental health, to support and advocate for adults with autism. Low level preventative services can work and that can be evidenced.

Scrutiny

We need a mechanism, other than the self assessment tool, to give us reliable information about the implementation of the strategy. LA's are ticking boxes that are totally empty. How can you be green for the training of front line professionals when no training has ever been delivered?

Advocacy

The need for autism specific advocates is increasing daily because of the benefit assessment and reassessments that adults are having. This will increase again when PIP is rolled out next month.

Advocacy for adults with autism is a specialised form of advocacy: I advocate for adults who are seeking employment through the Work Choice Programme, where their complex communication needs are not understood and are therefore not taken into account.

The failure of the provider to communicate effectively with two adults led to them having to seek help for their own levels of anxiety and mental health issues. My support group was contacted by a health care provider to see if we could offer any support/advocacy for the adults, which we did. The waiting list to access support via MIND is 5 months long.

Employment

There is very little support available for adults with AS/HFA, to help the adults to seek or maintain employment. What support there is, is often supplied by professionals with very little understanding of autism.

My own son who has HFA does not meet the criteria to have a personalised transition. In fact he has so far seen no one who has looked at his options.

Schools do not always inform Connexions that the young person has a form of autism, thus meaning that they receive no additional support at all during transition.

My local autism working group organised an event aimed at raising the profile of autism in the work place. The event was supported by the Mayor who also sent out invitations to employers in and around Sunderland - the event had to be cancelled because not one employer wanted to attend.

We need much more awareness in the work place so that employers can understand the many benefits that can be had for them by employing someone with autism.

Young people with AS and HFA would be more able to seek and maintain employment if they were taught the skills they are going to require to seek and maintain employment. They require social skills and effective communication skills. They need an environment in which to practice those skills.

I have only been given 5 minutes and I'm aware I'm probably well over so I'll stop there. Thank you."

There Is An Elephant In The Room.

Adults with autism have left Act Now For Autism in no doubt as to how terrifying the idea (and reality) of having a Work Capability Assessment is. People are currently being migrated from Incapacity Benefit to Employment Support Allowance and generally are worrying themselves sick about the prospect of having a WCA.

To compound this, from April 2013 we will see PIP rolled out in place of DLA. Every adult who currently receives DLA will face an assessment and then have to wait for a decision about what level of PIP they will be awarded.

Act Now for Autism is very concerned about the importance of ‘supportive evidence’ for the WCA, and it would seem the DWP are going to require ‘supportive evidence’ as part of the PIP assessment too.

Without supportive evidence autistic adults stand to lose their benefits.

We know there are a significant number of autistic adults and those with Aspergers Syndrome who do not have the supportive evidence they are going to need for either assessment.

We believe this is one of the biggest issues that autistic adults and the autism community across the UK face and yet we appear to be alone with our concerns. No-one else is raising this nationally - we really are puzzled as to why.

There are concerns being raised about how evidence will be gathered and by whom, there are attempts to take it to judicial review. We believe the more important issue is what will happen to the significant number of autistic adults who will not have any evidence to gather?

Having no evidence to gather will be used against our adults.

In 2009 the National Audit Office published a report  Supporting people With Autism Through Adulthood:

"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."

Three quarters of autistic adults and those with Aspergers Syndrome did not meet the eligibility criteria to access the services they required in 2009. There has been very little progress made to extend service provision for these adults since 2009 so where they get the supportive evidence they need?

Without Health and Social Care provision, autistic adults are left with only their GP's to oversee their care needs. Evidence from GP's will not be considered as supportive evidence as part of a benefit assessment/reassessment, Chris Grayling told us that.

There is an elephant in the room and the wrong strategy is being used to try to avert the consequences of it being there. What's more, the issue of 'supportive evidence' is going to catch out not just autistic adults and their families but others with hidden disability who don't require specialist input or care as well.

The Government want to cut/save 20% off the disability benefit cost. 

Potentially up to 200,000 autistic adults without supportive evidence are going to give them a good head start.