Action for Asperger's recognised for its person-centred care

The Mental Health Voluntary Sector Award for best person-centred service was awarded to Action for Asperger's. TLAP will be running a blog series showcasing all the runners up for the award which is organised by the Mental Health Providers Forum. Elaine Nicholson, CEO/Founder Action for Asperger's describes the early days - working from her lounge sofa to the present in which her charity offers 24 hour bespoke counselling using new technologies.

On a sunny day in April 2015, I was invited by the Mental Health Providers Forum (MHPF) to attend an awards luncheon at The Oval cricket ground in London. I was informed that my charity Action for Asperger's (AfA) had been short-listed for the award for personalised care in mental health in the voluntary sector. I was also advised that the award would be judged by Think Local Act Personal (TLAP). I duly attended, not knowing what to expect, having accrued only one award previously, and that was in 2012 when I won Peterborough City's Health Care Professional/Carer of the Year award. When the TLAP representative, Angela Boyle, took to the stage, and announced AfA's name, I turned to my colleague in a state of disbelief - mouth dropping open. This was wonderful news and brought the biggest of smiles to my face.

AfA is a charity that started life in October 2008 from my lounge sofa with the office side of things being undertaken in my spare bedroom. As a person who has children with Asperger's syndrome (hereafter referred to as autism) and other family members with the same condition, I knew it on an experiential level rather well.

What had dawned on me at the time was that the counselling profession (I qualified in 2005 as a certificated counsellor) was not 'getting it' with regards the needs of those with autism and the needs of those categorised as their close others. I was in my second year of an MSc in the psychodynamic counselling of children and adolescents, and the amount of training on this particular course that was to inform counselling students about Asperger's syndrome lasted a quarter of a day; one and a half hours to be precise. I considered this too scant for what counsellors needed to know for their potential child/adolescent clients, many of whom could be undiagnosed autists bearing in mind the statistic that 1:88 of us has autism.

In addition to feeling deprived of knowledge regarding the autistic condition, I was also receiving personal counselling (a requirement of study), and despite the fact that my therapist had numerous counselling and psychotherapy qualifications, she was showing me, week after week, that she did not understand autism for she continued to make incorrect interpretations about my personal familial disclosures that were directly to do with autism. On one occasion, when I described one adult family member's special interest - special (obsessive) interests can be a core feature of autism for many - this was misinterpreted as 'controlling' despite my protestations to the contrary. In all, the process of furthering my education this way had become somewhat arduous, and something had to change, not just for me, but also for all the autists and their families out there.

In 2007, as the end of my second year approached, and also, after our son was diagnosed with Asperger's syndrome - the second son of ours to be diagnosed as having Asperger's syndrome - I decided to shift my studies to a degree courses in autism. I was to complete both a PGC in Asperger's syndrome and a Master's in Autism as well. My Masters was about 'an evaluation of a bespoke model of counselling for lives that have become adversely affected by the experience of Asperger's syndrome'. My studies underpin all that AfA offers; we counsel those who have autism and those who are in a close relationship with someone who has autism. My research was to unearth that autists did not feel understood by the counselling profession by enlarge, and their carers/loved ones also felt misunderstood and not believed.

So AfA sprang to life on 1^st October 2008 from my sitting room. For nearly four years I purposely kept my foot on the proverbial brake, knowing that I could only do so much from my home base. Things ticked along in a steady fashion, but in August 2012, I decided that I could handle putting my foot on the AfA proverbial accelerator, and oh my...did we go! We took on one-roomed premises that were situated in the middle of a farmer's field in Barnwell, Northants, and then a year later, a second room at the same venue. By the time we left the premises end March 2015, AfA had accrued over 600 clients.

On 1^st April 2015, AfA moved into the UK's first autism-specialist counselling centre in Corby, Northants. We currently have nearly 800 clients. All persons who work for AfA are volunteers. We would like to be paid and are waiting for large scale funding to come our way but we are hopeful for the future that staff salaries might become a reality. Those who volunteer are driven by their sense of dedication to the cause and belief in the different way we counsel.

Our counselling method tends to cherry pick some parts of Cognitive Behavioural Therapy (CBT), but we tend not to use it wholly for many CBT strategies involve homework, something which people with autism tend not to like as children or as adults. CBT is also about a quick-fix solution, but as autism is a cradle-to-grave experience, CBT offers only a band-aid approach to an autist's difficulties I feel.

However, I stress that I am not totally against CBT, for it works for many, but for me, I cannot work with that methodology in its purest form. At AfA we utilise sensory therapy equipment in the counselling of autists also, for example, it might be helpful for an autist who has sensory proprioception issues (many autistic people have sensory issues) to 'walk and talk' in therapy...in which case, our LED light-up mat helps this process, for it lights as it is walked on. What is crucial to the process also is that counsellors receive autism-cognisant supervision. For example, telling an autistic man to look his boss in the face to ascertain what the boss might feel or think about him would be bad advice, for most autists struggle with eye contact and suffer prosopagnosia (face-blindness). Also, despite the well-known fact that autists like routine, they are also poorly organised, so we tend to keep appointments fluid, not rigid. Our ethos is 'once under the wing, always under the wing'.

What underpins our charity is the 'everlasting arms' concept we provide. Not only do we see clients 1:1, but we also counsel them via the use of email, social media, Skype/Facetime. This allows us to reach autists, who, by virtue of their autism might not feel that they are able to handle a 1:1 in person situation. We also run outreach surgeries; AfA North in Bedale, North Yorkshire and AfA Wales in Llandudno Junction. These surgeries are run one day every 6 weeks.

By pushing the boundaries of extant counselling methodologies and belief systems, we have managed to satisfy demand. We have also managed to save lives; two young autists were effectively saved from suicide by their being able to private message us on social media. While this sounds a lot to manage, the fact that AfA has presented itself as a 'no limits' support service has meant that people feel 'held' by the process. Simply by knowing they can reach out and get help when they need to, and how they need to, and without a six-month wait (average NHS waiting time according to anecdotal evidence) has the effect of assuaging upset minds. Consultations are steadily managed and personal care does not waiver. People start to feel better, knowing that they are not going to be dumped by a system of care that is limited and designed for a typical neurological profile, when they in fact are atypical. AfA offers an alternative to neurotypical counselling therapies. AfA's exponential growth and feedback from clients informs us that it works...bringing an end to the round peg-square hole experience of autistic clients engaged in the counselling process.