We are absolutely delighted to announce that we have started to be able to offer face to face appointments. Lisa and I today visited the Ageuk building today we have booked and we hope it will be prefect for our needs, with plenty of space and privacy. We look forward to seeing people in person and thank everybody who has been waiting for us.
Supporting those with autism and mental health needs.
The introduction of the Improving Access to Psychological Therapies programme in 2006 was tasked with enabling more people with depression and anxiety to receive NICE guideline treatments. The programme’s reach was widened in 2010 to include adults of all ages, with the aim of providing psychological interventions to all. For example including those with mild learning disabilities, chronic pain or co-morbid physical conditions. In most services this will also include treating patients with an Autism Spectrum Conditions. This can be for a variety of reasons. The stepped care model means that in some counties the IAPT service is where all patients are assessed first, and only referred on to secondary mental health care if required. Also as autism is neither a mental health diagnosis or learning disability per se, those individuals with ASC but no severe and enduring mental health disorder and with an average IQ are not eligible for secondary mental health services or learning disability support. Consequently individuals with Asperger Syndrome or High Functioning Autism often do not have access to any specialist services and when experiencing psychological difficulties are directed to mainstream IAPT services.
So how do IAPT services support those with ASC, and how effective is it? Firstly it is useful to consider what difficulties those with AS or HFA experience. The term "mild autism" is sometimes used in relation to Asperger Syndrome (AS) or High Functioning Autism (HFA), however this is a misnomer and often serves only to mask, blur and devalue the difficulties experienced by these individuals on a daily basisthroughout life. Furthermore the term “mild autism” raises expectations and puts pressure on individuals to cope and "behave appropriately". In fact many individuals struggle greatly, acerbated by the fact their difficulties are not immediately obvious. In addition to a general lack of knowledge about ASC in the wider population, many individuals on the autism spectrum also have an incomplete understanding of their condition and the huge variation in presentation within this spectrum.
ASC affects an individual’s ability to communicate, develop relationships, mange social situations, plan, sequence and predict the future events such as consequences of actions and others’ reaction; and deal with change among other differences. Although the difficulties associated with Wing and Gould’s (1998) Triad of Impairment may be expressed differently and to different degrees in each individual on the autism spectrum, they still share these core differences. For example, someone with severe autism may not be able to communicate verbally, whereas someone with a diagnosis of Asperger Syndrome (AS) may appear to have an exceptional grasp of language but struggle greatly understanding what another person is saying communicating in groups. Individuals with AS will often useit can use cognition, rather than natural instinct, to make sense of and try to fit in with the non-autistic, “Neuro-typical” (NT) society. This can mask their difficulties from others, and can be exhausting for the individual. In addition to the inherent difficulties associated with ASC individuals with AS or HFA are often acutely aware of being “different”or “deficient” in comparison to the general population. This negative self-image is often entrenched further by painful social experiences such as bullying, due to their difficulty interacting socially. It is not surprising that there is a higher rate of mental health issues, such anxiety and depression within this population (Attwood 2010).
Despite this increased vulnerability to develop secondary mental health issues, many individuals with High Functioning Autism or Asperger Syndrome slip through the gap between mainstream services. Often due their average or above average IQ they are not eligible for learning disability services, nor do they qualify as having “severe and enduring mental health problems” and therefore do not get support from secondary mental health teams. In addition many clustering systems, now used to determine service parameters and funding, are currently unable to capture the nature and extent of difficulties experienced by individuals (i.e. HoNOS). Furthermore some individuals on the autism spectrum are reluctant to admit to difficulties or may lack insight into these. Due to the complex and enduring nature of autism spectrum conditions, the less well understood presentation and continuing misunderstanding of “mild autism”, many mental health services can be reluctant to support these individuals. This may be due to staff thinking they are not adequately trained or that generic materials and approaches would not be effective in improving symptoms of mental health in individuals with Asperger Syndrome or High Functioning Autism. In addition, many services are “recovery” orientated and therefore believe that treating someone with a developmental disorder, such as autism, would not fit into this model. There appears to be a misunderstanding between treating the mental health of an individual on the autism spectrum and treating the autism spectrum condition itself. It is important to understand that although the two often go together, treating the mental health aspects can also have a positive impact on the autism spectrum condition and quality of life for the individual with autism.
With the advent of the new IAPT system two questions can be posed:
1. Can IAPT provide useful treatment for these individuals; and
2. Is it possible to achieve positive outcomes for individuals with ASC?
Research shows us that Cognitive Behavioural Therapy (CBT) can be effective for those on the autism spectrum(Attwood, 2010, Gaus, 2007). Consequently the evidence base supports the use of traditional or "high Intensity” (HI) CBT for patients with ASC. Furthermore ”low intensity” (LI) interventions can be equally as useful and sometimes be more successful for individuals on the autism spectrum. As there are no set protocols practitioners can use the specific interventions in adapted ways to fit the patient’s needs. For example, many people with ASC may have problems with developing and maintaining a good sleep routine and the LI technique of sleep hygiene (linked to an awareness of how their sensory difference may impact their sleep) can be extremely useful. Furthermore it is well known that people with ASC can struggle to have a healthy daily and weekly routine and can become focused on specific activities, LI behavioural activation can be a useful and visual way of changing a patient's routine.
In fact all the LI interventions can be used effectively for individuals with ASC, however it is essential that adjustments are made. This includes practical changes such as incorporating more sessions, longer sessions or more frequent sessions. In addition it can be useful to adapt materials, for example general changes such as clear short sentences, minimizing jargon and metaphors and checking understanding are also useful. This will not necessarily mean changing materials into "easy read", often it can be more useful to link in a patients specific interest (e.g. planes, computers, animals) into the material.
As with individuals with learning disabilities (LD), it is essential to establish the patient's understanding of their own emotions, whether they are aware of how this links to their thinking, behaviours and physical sensations, and terms they use to describe these things. In order to make LIinterventions as effective as possible, it is often necessary to spend time clarifying these concepts before working on specific interventions. However it is important not to simply engage with a patient with ASC in completely the same way as an individual with LD. Although LD approaches can be useful, LD services are not adequate or open to individuals on the ASC, and can put off those "high functioning patients".
There are key notes of caution when working with people with ASC. It is essential, that clinicians are trained in autism and how this affects mental health, and are supervised by individuals who have understanding of ASC. In addition the service as a whole needs to support and facilitate adaptations such as time and resources, which practically can be difficult to sustain. It is also important to bear in mind that the recovery based model on which IAPT is founded is not adequate for dealing with this client group. As with LongTerm Health Conditions and LD, this is a lifelong condition and it is important to get across to the patient during therapy that their autism is not "fixable", rather it is about focusing on the symptoms of depression and anxiety and promoting ongoing management and awareness. This is possible within a “recovery focused” service, but will require specific adaption. It is also important to help the patient understand and work with their autism, rather than against it. This requires an understanding of the idiosyncratic presentation, strengths and areas of development both from the patient and the professional. This may well form the content of the first few sessions before the “real work” commences. There also will need to be an acceptance that such patients may not finish therapy with no symptoms of anxiety or depression, as for many on the spectrum this is a constant feature. Recent developments within the IAPT programme into looking at the changes in measures of depression and anxiety at the beginning and end of treatment, rather than only claiming “recovery” if patient fall under a set score would assist the inclusion of these more complex patients.
It is important to note that CBT will not be appropriate for all individuals with ASC, some will require specialist support. However there are very few services nationally who support people with ASC but without a significant learning disability and therefore have no or very little access to adult social care or healthcare funding. It is this gap that people with high functioning ASC often fall into. There is no doubt that more services for high functioning individuals with autism spectrum condition and with emotional, social and practical needs are required. However, currently such individuals are invisible within service statistics. IAPT does not class people with ASC as a special interest group, so there is no desire to monitor how many patients with these characteristics or diagnoses are currently within services. Similarly secondary mental health and LD services are not set up to support these people or monitor the level of need.
Further, despite the Autism Act (2009), there are no specific funding steams to help health and social care providers to develop services specifically targeting those on the autism spectrum without a learning disability. Although NICE Guidance states that, amongst others, staff should “foster the person’s autonomy in decisions about care and support self-management” in addition to taking account of the physical environment as well as providing management and support this group with psycho-social interventions (NICE Guidance 2013) it is not clear who should take responsibility for the direct delivery of these services. Often it is down to local authorities to fund 3rd sector organizations to provide this as there appears to be little room in statutory services to provide this.
However, the fact remains that many individuals with "high functioning" ASC do require specific consideration in order to access meaningful psychological support. Facilitating training and adaptation within IAPT services are essential to avoid this vulnerable group falling further through the gaps. In addition, IAPT would work as an early warning beacon to deterioration in mental health and timely referral to secondary services, or undertake preventative work by offering low intensity, ongoing support. The challenge for IAPT services is how they support these individuals alongside the everyday pressures of running evidenced based psychotherapy. In addition, if IAPT sites are able to start identifying and engaging with ASC individuals this can give more weight behind developing specialist services for this patient group, that in the future could work alongside the main stream mental health teams. This way IAPT could provide useful treatment for these individuals and achieve long-term positive outcomes for individuals with ASC.
Bettina, Lisa, Howard and Ruth. Four Bloggers, Four Perspectives. All Passionate about Autism