Jane's story

Jane is a 25-year-old woman with mild learning disabilities. She was diagnosed at six-years-old with an autistic spectrum disorder. Jane’s parents are both of Middle Eastern origin.

Growing up, Jane was exposed to a volatile and disruptive environment. Although diagnosed as autistic, her needs were not supported by statutory services under an autistic model of care.

Due to her autism, Jane has impairments in three main areas of normative functioning; social and emotional interaction; language and communication; and flexible thinking (The Triad of Impairments). Jane has very little impulse control and cannot relate behaviour to consequence. She will not learn by experience, but only by rote. Complicating this further Jane’s parents, gave her unclear and unrealistic expectations, making statements like, ‘if you get married to a young man and have children, you will be normal’.

As Jane approached her late teens, she began to display high-risk behaviours and was later diagnosed with depression with psychotic symptoms, as a result of reporting hearing voices in her head. She was prescribed both anti-depressant and anti-psychotic medication. Jane was also assessed as requiring support at an enhanced level under the Care Programme Approach (CPA) which was co-ordinated by a Clinical Nurse Behaviour Specialist (CNBS).

At the age of 22, Jane’s relationship with her family broke down and as a result she requested support from her local authority to help her find somewhere to live. Jane was found a place in a residential care home.

Whilst in residential care, Jane’s behaviours continued as before to a large degree primarily as a result of the residential care home within which she was living, being unable to provide support sensitive to, and understanding of, her particular autistic traits. It was at this point that Consensus Support Services were approached about accepting her into a new supported living service that had been developing in partnership with the local authority and a housing association. Jane was assessed and was offered a tenancy in her own flat in the spring of 2009.

When Jane first moved in to her new flat there was some concern that, given Jane’s particular complex needs, the staff at the Consensus may have lacked the theoretical understanding of the autistic model of care and may also struggle as the service provided by Consensus had only been in operation for two months.

For most team members this was indeed their first experience of working within an autistic model of care, and the shift in thinking in practice and philosophy from residential care was a giant leap. Some staff found the care programmes too rigid and structured in approach, and the temptation to break away or be inconsistent was strong. Many staff had come from work environments that promoted the provision of a multitude of choices for their clients and so viewed structure as institutional and inflexible. Nevertheless, in an autistic environment a multitude of choices can cause high levels of anxiety, simply because the volume of information processing and decision-making is too much for the individual to cope with.

To provide an effective and consistent package of care for Jane, the team needed to learn, and learn fast. An inconsistent approach to Jane’s behavioural needs could result in a major incident that would compromise her safety or that of a member of the public or staff. Not only did staff need to consistently follow the behaviour guidelines set for Jane, they needed to understand them as well.

As an organisation, Consensus recognised that an intensive package of training needed to be implemented to ensure that the autistic model of care was at the core of the team’s practice. This prompted a restructuring of the training programme to make sure that staff had a sound theoretical knowledge of autism practice right from the start of their employment with the service.

Now, staff have to undertake thorough autism specific training as part of their mandatory ‘pathway one’ programme. This includes Autism Awareness, Effective Communication, TEACCH Induction (and later the full intensive programme) and Reporting and Recording. Consensus also held workshops on the needs of individual tenants (including Jane) by Tay Paul (Consensus Behaviour Specialist) and the CNBS. Dr. Margaret Anderson (Autism Specialist Consultant) has also developed an intensive autism induction package, which is currently being piloted.

With the introduction of the training package and the willingness of the staff team to improve their autism related practice, Consensus began to see an improvement in a relatively short period of time. Staff were able to see the benefits of consistent intervention and good recording. On occasions where consistency or thoroughness slipped, the team recognised the negative impact that resulted and ensured that the same mistakes were not repeated.

Jane’s behaviour continued to challenge the team but over time it became clear that by following management strategies, early intervention was preventing behaviours from escalating beyond mild anxiety. Jane appeared to flourish as a result of this, and would seek out staff support for reassurance with her anxiety. The confidence of staff appeared to work as a stabilising force in Jane’s life.

In early September, Jane had her second enhanced CPA review since moving to her new flat supported by Consensus. The positive impact of living within her own flat was acknowledged and it was agreed that because of the evident progress made she no longer needed to be on a CPA at all. This was a huge success and achievement for Jane who had, for many years, been faced with only bad news in her life.

The success achieved by Jane in such a short space of time addressed the early concerns that the staff at Consensus may not have the experience or skills to work with somebody as complex as her. It was evident that, just as Jane had developed new skills whilst living in her new home, so too had the staff team appointed to support her through both the intensive and bespoke training they received and from the additional professional support and guidance provided to the service from the Consensus Behavioural Assessment Team.

The feedback from Jane’s Clinical Nurse Specialist has been fantastic and really positive, but the staff know that now is not the time to think that their job is done. Jane’s support (as well as that of the other tenants) will only continue to be effective if staff work consistently, communicate effectively with her and above all, never become complacent!