Written evidence from the National Autistic Society (MHA0015) About autism: Autism is a lifelong disability which affects how people communicate and interact with the world. There are approximately 700,000 autistic adults and children in the UK. Without the right support or understanding, autistic people can miss out on an education, struggle to find work and become extremely isolated. About us: The National Autistic Society is here to transform lives, change attitudes and create a society that works for autistic people. We transform lives by providing support, information and practical advice for the 700,000 autistic adults and children in the UK, as well as their three million family members and carers. Since 1962, autistic people have turned to us at key moments or challenging times in their lives, be it getting a diagnosis, going to school or finding work. We change attitudes by improving public understanding of autism and the difficulties many autistic people face. We also work closely with businesses, local authorities and government to help them provide more autism-friendly spaces, deliver better services and improve laws. We have come a long way but it is not good enough. www.autism.org.uk Introduction Autism is not a mental health condition, but many autistic people develop mental health problems and too many reach crisis point avoidably. This is because they cannot access the support they desperately need in the community. Our APPGA inquiry into the Autism Act 10 years on shows that 76% of autistic adults reached out for mental health support in the last five years and only 14% said there were enough services in their area to meet their needs. This deeply concerning level of unmet need has real and shocking consequences, with research from Autistica showing 66% of autistic adults have thought about taking their own life and with 35% having attempted suicide. Autistic people need to be supported in different and better ways including giving them the preventative services and social care that is urgently needed in the first place. They need to be supported by professionals who have a clear understanding of autism and be in environments that are suited to their sensory needs. We have outlined the relevant parts of the White Paper which must be considered in order to prevent unnecessary admission, support discharge and account for unintended consequences of the proposals to ensure there are adequate safeguards to meet autistic people’s needs. Removal of autism from mental disorder definition We welcome this proposal, the Mental Health Act Code of Practice states that detention is rarely likely to be helpful for autistic people without a mental health condition. Approved Mental Health Professionals (AMHPs) must be fully trained in understanding autism and working with autistic people. This will enable them to distinguish between autistic people with and without mental health conditions. Trained professionals can also support autistic peoples’ communication and sensory needs during the assessment phase to prevent unnecessary distressed behaviour and ensure that there is an actual therapeutic benefit for those who are detained. Similarly, during assessment this role should also include a clear documentation process which states why treatment cannot be delivered within the community as opposed to in hospital. The Mental Health Act (MHA) and the Mental Capacity Act (MCA) Whilst removing autistic people from the scope of the MHA is a positive step, there is still the possibility that they are deprived of their liberty in hospital under the MCA. This would risk not seeing the reduction in the number of autistic people in inpatient facilities that is needed. Moreover, if detentions are necessary, they should be authorised under the MHA to ensure that they are entitled to the requirements for assessment and/or treatment and the rights incorporated within it. We also have concerns regarding proposals for the decision about which act applies being determined by whether someone objects. As autistic people can struggle to communicate their wishes at times, which combined with low professional understanding of autism can mean that their communication and behaviour is misunderstood. Therefore, we are concerned future decisions on which legislation to use could lead to the wrong decision being made for someone who does have a mental health condition. If “objecting” is used as a distinction, the many ways someone can express or communicate their objection must be taken into account. Duty on community services We believe the proposal to create a new duty on local commissioners to ensure the adequate supply of community services is vital. Not having enough services can be both the reason for an autistic person’s admission and for preventing their discharge. Without the right services in the community, other changes to the legislation (including the change to the definition) will not work. Under the Autism Act and the Care Act, autistic adults in England are entitled to the care, support and services they need and children’s needs should be met under the Children and Families Act. However, A 2018 survey of councils found that 74% of respondents reported that individuals diagnosed with autism subsequently had difficulty accessing mental health services. This level of unmet need is unacceptable. Services are needed at 5 critical points; 1. Preventative services – these maintain people’s general wellbeing and avoid the social isolation and loneliness that can lead to further mental health problems. 2. General mental health support – the services that anyone might access if they need support, but delivered in a way that is adapted to autistic people’s needs. 3. Crisis support in the community – emergency support to stop someone needing to be admitted to hospital. 4. Services to move out of hospital into – these may need particularly intensive support and specially trained staff. They may also need a period of concurrent funding with a hospital bed, in case someone needs to briefly return to hospital. 5. Advice and support for families - to support the discharge of relatives from inpatients facilities. It must be noted that in addition to these services, key interdependencies with social care and education support are vital to supporting autistic people’s other needs. If those needs are not met, they may impact someone’s mental wellbeing. In order to implement this duty effectively, the Government needs to review existing commissioning for autistic people and people with learning disabilities. Currently, there is not a clear picture of the services that are commissioned across England. This is because there is not regularly collected information, nor an established model for commissioners to follow. Without this, it is impossible to see how services are meeting the needs of autistic people and ensure they meet their needs in the future. Alternatives to admission Alternatives to admission must be provided for both autistic people with and without a mental health condition. One example of this is the Durham crash pad model. The crash pad is a self-contained flat and is designed for when a person’s existing placement breaks down. There is currently little evidence what community alternatives would benefit autistic people without a learning disability. More research and support for local commissioners is needed. Key to this will be making sure that community mental health services are accessible and adjusted for autistic people, and that social care is sufficiently resourced. The creation of a local ‘at risk’ or ‘support’ register We welcome the creation of a local support register to ensure the mental health system knows about autistic people who are at risk of admission. This should already be happening with dynamic risk registers, however, in our experience these have not been used to full effect across England. In order to use it more effectively, the register should be broad enough to capture not just those at immediate risk, but those who are at risk of admission in the future. Doing so, and linking the register to both the duty on commissioners and to Care and Treatment Reviews would ensure autistic people access community support and prevent admission. Making Care and Treatment Reviews (CTRs) statutory We believe that for autistic people, if an admission to hospital is necessary this should be seen as a temporary measure, not a long-term solution. Assuring Transformation data shows the average length of stay for an autistic person or someone with a learning disability is five and a half years, this must change. Discharge from a hospital should be seen as an integral part of someone’s care plan from the point of admission. Planning for discharge, and sticking to this plan, will help focus professionals and statutory bodies on finding a long-term plan that works for each individual. Formally incorporating the actions agreed in CTRs will be key to this, but it must be clear how the Government will ensure compliance. Furthermore, we have heard that often Responsible Clinicians do not have sufficient understanding about autism, therefore we believe that the duty should be on all professionals to explain why recommendations haven’t been followed. Restraint, seclusion and over-medication The overuse of restraint (both physical and chemical) on autistic people is well documented including through NHS England’s STOMP STAMP programme and the CQC’s thematic review on restraint and seclusion. Autism is not a mental health condition and NICE guidance is clear that psychotropic drugs should not be used to treat the core features of autism. However, psychotropic medication is being prescribed without a corresponding diagnosis of a mental health condition in autistic people. We hope that the proposals will reduce the number of people subject to restraint or over-medication. However, to end poor practice once and for all, staff need training in autism and avoiding physical interventions.