Written evidence submitted by the National Autistic Society (MHB0038)

Autism is a lifelong disability that affects how a person communicates with, and relates to other people. It also affects how they make sense of the world around them. It is a spectrum condition, which means that while there are certain difficulties that everyone on the autism spectrum shares, the condition affects them in different ways. Some autistic people are able to live relatively independent lives, while others will need a lifetime of specialist support. It affects more than one in 100 people in the UK.

The National Autistic Society is the UK’s leading autism charity. Since we began 60 years ago, we have been pioneering new ways to support people and understand autism. We continue to learn every day from the children and adults we support in our schools and care services. Based on our experience, and with support from our members, donors and volunteers, we provide life-changing information and advice to millions of autistic people, their families and friends. We also support professionals, politicians and the public to better understand autism, so that more autistic people of all ages can be understood, supported and appreciated for who they are.

The National Autistic Society provides the secretariat to the All-Party Parliamentary Group on Autism (APPGA). We supported the APPGA in carrying out an inquiry in 2019 into the impact of the Autism Act 2009, a landmark piece of legislation that was the first piece of legislation dedicated to improving support and services for a specific group of disabled people.

The Equality Act 2010 is clear that autism is a disability, in terms of it being an impairment that has a long-term and substantial adverse effect on the autistic person’s ability to carry out normal day-to-day activities. However, for many people on the autism spectrum, autism is a hidden disability. This means that the wider public may not be aware of the things they struggle with and their need for support or adjustments.

The National Autistic Society campaigns for better services for autistic people across the country. We want to try and prevent people from being admitted as inpatients to mental health hospitals. In some cases, the way that an autistic person behaves can be mistaken for a sign of mental illness. This is incorrect, and the Mental Health Act Code of Practice is clear that this alone does not justify someone being ‘sectioned’. This can be an issue for many autistic people, regardless of IQ or whether they communicate using speech. The Code of Practice also says that “compulsory treatment in a hospital setting is rarely likely to be helpful,” for an autistic person. We highlighted many of the issues that autistic people and their families face through our Transforming Care campaign. We run the Autism inpatient mental health casework service (England) which offers advice and support to autistic people and the families of autistic people in England who have been detained in a mental health hospital, or are at imminent risk of detention or re-detention.

This submission will address the Government's draft Mental Health Bill, with a focus on the intention to reduce the number of autistic people in mental health hospitals. The revised detention criteria and principles of least restriction and therapeutic benefit have the potential to change the way that the Mental Health Act is experienced by autistic people. However, there are a number of areas where we would recommend strengthening duties in order to meet the needs of this group more closely.

 

How the changes made by the draft Bill will work in practice, particularly alongside other pieces of legislation including the Mental Capacity Act? Might there be unintended consequences and, if so, how should those risks be mitigated?

Autism is not a mental health condition and mental health hospitals are not the right place for the vast majority of autistic people. Yet the Mental Health Act 1983 (MHA) defines autism as a mental disorder. This allows autistic people to be legally detained in mental health hospitals, just because they are autistic. Some spend many months, even years, in hospitals many miles from their families, this is a deprivation of liberty which poses serious human rights concerns. NHS data shows that the overwhelming majority (93%) of autistic people in an inpatient setting are put there using the MHA and we continue to hear deeply concerning reports of overmedication, inappropriate restraint and seclusion.[1]

The draft Mental Health Bill amendments will mean that autism is no longer included as a mental disorder within certain parts of the MHA. This will protect autistic people from involuntary, lengthy admissions under s.3 of the Act, when they don’t have an accompanying mental health condition. However, it is vital to make sure that the Mental Capacity Act (MCA) is not used as a substitute. As it stands, it will remain possible to use the MCA to impose a deprivation or restriction of liberty upon those deemed to lack capacity, in some cases this translates to detention within a mental health hospital. This would undermine the Government’s policy intention if not addressed.

Without further guidance on the use of the MCA, the Government’s targets for reducing the numbers of autistic people in mental health hospitals may be undermined. We are concerned that the MCA is not generally appropriate for use deciding on treatment in a mental health hospital, as it is primarily intended to help decide issues relating to people’s overall care and living arrangements. We are also very concerned that someone detained under the MCA would not benefit from the procedural safeguards and access to the Mental Health Tribunal if required. If an autistic individual is not eligible to be detained under the revised MHA, it follows that by association the MCA is not appropriate either. This is because there would not be a treatable mental disorder, nor would this be the least restrictive option (as set out in the proposed detention criteria).

The relationship between the MHA and the MCA needs to be carefully judged so that potential injustices are avoided, while preserving the proposed changes to the definition of “mental disorder”. It is important that potential consequences of reforming the Act do not become reasons to sacrifice the much needed, progressive principle behind the reform. We suggest that the Pre-Legislative Scrutiny Committee consider whether language precluding the general use of the MCA in mental health hospitals would be appropriate and would better reflect the overall intention of the draft Bill. It is our recommendation that the MCA is not used at all in these settings. It will also be vital to set out clear guidance on this in the revised MCA Code of Practice.

 

Does the draft Bill strike the right balance between increasing patient autonomy and ensuring the safety of patients and others? How is that balance likely to be applied in practice?

Although the draft Bill will increase the potential for autistic people to safely exercise autonomy, without the right resources in place, we are worried that this potential might not be realised. Autism is often poorly understood and many inpatient facilities lack the resources, training and staff needed to adapt mental health treatment for autistic people. This can significantly impair opportunities for an autistic person to have a say in their own care, or even have their dignity respected because of overuse of medication, seclusion and restraint.

In advance decisions, consent and communication

Clause 11 of the draft Mental Health Bill introduces new safeguards for patients refusing treatment with capacity or competence at the time or with a valid in advance decision. Some autistic people may struggle with certain forms of communication either all of the time or under certain circumstances. This can make it difficult to assess when someone has provided their consent or objected. There should therefore, be safeguards in place to better ascertain and respect the wishes of autistic patients. Wherever possible healthcare staff should work with the autistic person to understand their preferred methods of expression and communication. This may involve specific training around supporting communication and consent. Alternative modes of communication should be considered, including drawing or writing or working with family members and caregivers.

Some autistic people may ‘mask’ or ‘camouflage’, which can impact how they appear in a situation or make it harder for them to express their preferences and needs. Health professionals should maintain an awareness of masking. When an autistic person is being treated by health care professionals with an understanding and acceptance of autism this can help them to ‘unmask’.

Use of force

The circumstances leading up to a decision to administer medication or use force should be thoroughly investigated and addressed before treatment is given non-consensually. Wards can be noisy, bright and unpredictable. Without reasonable adjustments to the environment and support from a professional who understands autism, inpatient wards can be completely overwhelming, particularly for those with sensitivity to sound, light or touch. These factors can increase someone’s level of distress and lead to meltdowns.

A meltdown is an intense response to an overwhelming situation. It happens when an autistic person becomes completely overwhelmed by their current situation and temporarily loses control of their behaviour. This loss of control can be expressed verbally (e.g. shouting, screaming, crying), physically (e.g. kicking, lashing out, biting) or in both ways. Other autistic people may become withdrawn and unable to speak, move or interact. Without the right training, staff may respond to an autistic meltdown with the use of force, medication or seclusion. It is important to know the difference between a meltdown and symptoms of a mental health condition as well as how they should be responded to. The use of force can be extremely distressing to an autistic person experiencing a meltdown and exacerbate rather than diffuse the situation. Attention should also be given to how to prevent these situations arising in the first place through better understanding and reasonable adjustments. This is fundamental to balancing and respecting patient autonomy.

Settings rated inadequate

We are also concerned that proposed changes to the Act do not address the problem of autistic people being detained in settings rated inadequate by the CQC. This applies to both those detained for a period of up to 28 days under s.2 MHA and for those deemed to have a mental health condition and detained under s.3 MHA. The CQC reported a worrying rise in inadequate inpatient care for autistic people and people with a learning disability in 2020[2] and since there have not been sufficient measures to reverse this trend. The Building the Right Support Action Plan acknowledges this issue and suggests changes to ensure that these kinds of admissions only occur when they are considered to be the best option to either the autistic individual or their family. However, a lack of high-quality supply could lead to this not really being a choice. Urgent action is needed to tackle poor quality services so that any appropriate choice about admission is made on a fair basis, not because it’s the only option.



To what extent will the draft Bill reduce inequalities in people’s experiences of the Mental Health Act, especially those experienced by ethnic minority communities and in particular of black African and Caribbean heritage? What more could it do?

There is insufficient evidence on the experiences of autistic people from ethnic minority communities including those of black African and Caribbean heritage, but we know it can be even harder for autistic people in these communities to get the support they need across all areas of life. We believe more research is needed into the experiences of autistic people from ethnic minority communities, to identify these barriers and action should be taken by the Government to overcome them.

What more could the draft Bill do to reduce the impact of financial inequalities in people's experiences of the Mental Health Act?

A lack of suitable housing for autistic people and people with a learning disability is one of the main reasons for delayed discharge. As well as this, ‘double running’ costs (when a person is still an inpatient requiring a bed, and a community care package is also being put in place), present a financial burden which can unnecessarily elongate inpatient stays. To get someone from the wrong care in hospital to the right care in the community, funding needs to be moved with them.

In order to resolve the financial elements that prevent timely discharge and indeed admissions in the first place, health and social care reform is needed. The amendments to the Bill alone are not enough to end the scandal of autistic people being wrongly detained in mental health hospitals. In particular, services are needed at five critical points:

- Preventative services
- General mental health support
- Crisis support in the community
- Services to move out of hospital into
- Advice and support for families to get their relatives out

A lack of available funds for adult social care means that at present services for autistic people are inadequate and understaffed or largely non-existent.

 

What are your views on the changes to how the Act applies to autistic people and those with learning disabilities?

Currently the MHA does not adequately protect the rights of autistic people. Despite previous commitments from successive governments to reduce figures, the number of autistic people in inpatient facilities has actually increased. We have seen some progress in moving those with a learning disability from hospital into the community but this progress has not been replicated for autistic people. In 2015, autistic people made up 38% of the number in hospital, now it is 61%[3]. Changing the definition of “mental disorder” in the MHA so it no longer includes autism, is a welcome change that should prevent the wrongful detention of autistic people who do not have a mental health condition. We also support the principle of least restriction and measures that will increase access to tribunals and advocates, with the caveat that the usefulness of these measures will depend on health and legal professionals’ understanding of autism.

Therapeutic benefit of treatment

Clause 6 of the draft Mental Health Bill sets out the requirement for treatment to be ‘appropriate.’ We are concerned this does not place enough emphasis on therapeutic benefit. We recommend that ‘appropriate’ is altered to ‘therapeutically beneficial.’ This should be defined to take into consideration the specific negative implications of hospitalisation for an autistic person as well as determining whether that treatment can be successfully adapted to suit the needs of the individual. In many cases it will not be feasible to provide therapeutically beneficial treatment in an inpatient setting.

We often see evidence that autistic people are subject to health inequalities in terms of receiving adequate and effective treatment for co-occurring mental health conditions. For example, 2021 research suggests that whilst it is largely accepted that 20-30% of those in treatment for anorexia nervosa show diagnostic features of autism, the impact that this has on experiences of symptoms and treatment is not fully understood by professionals involved in their care.[4] Research like this suggests a lack of knowledge when it comes to the influence a diagnosis of autism has on the kind of therapeutic interventions that are likely to be beneficial. The results of our 2020 mental health survey further reinforce these findings by showing that autistic people often feel that their behaviour is misinterpreted in mental health settings.[5] Our conversations with healthcare professionals have also highlighted inconsistencies with training, meaning that often professionals lack experience with supporting autistic people’s mental health and can lack confidence with autistic clients.[6]

Assessment of co-occurring mental health conditions

For both Clauses 1 and 6 of the draft Mental Health Bill to have the intended impact, health professionals will need training that enables them to evaluate the severity of co-occuring mental health conditions in autistic people and successfully differentiate between autism and symptoms of a mental health condition. Even with changes to the definition of mental disorder and detention criteria, many autistic people will remain eligible for detention under s.2 of the MHA, Part III of the MHA or indeed under s.3 if they have a co-occuring mental health condition. This is especially pertinent given the fact that high numbers of autistic people suffer from poor mental health. Our 2019 Mental Health Survey found that 94% of autistic adults reported experiencing anxiety and 83% reported experiencing depression.[7]

If a patient is held under s.2 of the MHA, assessment of whether they do have a mental health condition should be done with an awareness and understanding of autism. This is particularly crucial for groups that are historically less well understood and less frequently diagnosed for example autistic women and girls that do not have a learning disability. NHS digital statistics indicate that this group is worryingly overrepresented within mental health hospitals.[8]

We also recommend adding language to the Clause 3 detention criteria amendments to clarify that when an autistic person is detained using s.3 of the MHA, this should be because they fulfil the detention criteria on account of their mental health condition alone. References to a need to detain a person for medical treatment in the Bill, could be qualified by adding ‘for a diagnosed mental health disorder.’ This should help to prevent the unnecessary detention of autistic people that do have a co-occurring mental health disorder but are not eligible for detention based on that mental health disorder alone. This should also safeguard against additional mental health diagnoses for example emotionally unstable personality disorder, being assigned to autistic patients in order to justify detention.

ICBs and risk registers

Reducing inappropriate and unhelpful admissions to mental health hospitals should not result in autistic people being left without any support.  Whilst changes to the MHA should mean that fewer autistic people are eligible for detention, this will not mean that no intervention is needed. The importance of preventing autistic people from reaching crisis cannot be overstated. Clause 2 New subsection 125D, requires Integrated Care Board’s to maintain a register for autistic people at risk of admission. Whilst this may identify those in urgent need, it is imperative that this can be met with appropriate support.  Clause 2, New Section 125E sets out that ICBs and Local Authorities will also need to have regard to risk registers and the needs of the local ‘at risk’ population when carrying out their commissioning duties. We are concerned that in this case, the use of ‘regard to’ will not create a strong enough duty to provide the community care that is necessary and recommend that this language is amended to require a duty for ICBs and local authorities to collaborate to meet the needs of the local ‘at risk’ population unless a good reason not to can be demonstrated.

C(E)TRs

Placing C(E)TRs on a statutory footing within the MHA reforms has been posited as a way to speed up the discharge of detained autistic patients. However, we are concerned that the provisions around enforcing C(E)TRs are inadequate and need to be strengthened for this to prove beneficial. As currently expressed, Clause 2 new section 125A places the right to access the C(E)TR process on a statutory footing, but does little to make sure that actions from the C(E)TR are enforced. Our insight gathering found that this is a particular point at which autistic people and their families face barriers. New section 125C requires the patient’s responsible clinician, the responsible commissioner [9] and appropriate ICB must have ‘regard to’ recommendations resulting from C(E)TRs. This leaves too much room for important recommendations to be dismissed, we suggest strengthening the duty with alternative language that suggests a duty to promptly fulfil recommendations from C(E)TRs unless a good reason not to can be demonstrated.

Part III of the MHA

Further attention is also needed on Part III of the MHA to better reduce admissions of autistic people. Even without a change to the law, there are several areas where increased services and support could prevent circumstances that may lead to offending. Surveys and interviews carried out by NAS for a soon to be published report on youth justice have highlighted both lack of autism diagnosis and a lack of support from school and other services as contributing to autistic young people going on to offend or reoffend. This again suggests that strengthening the duties for further commitments to increasing support and providing community-based alternatives to detention would be beneficial to autistic people and reduce reliance on Part III of the MHA.

 

To what extent will the draft Bill achieve its aims of reducing detention, avoiding detention in inappropriate settings and reducing the number of Community Treatment Orders?

As it stands the draft Bill will only partially achieve its aims of reducing and avoiding detentions in inappropriate settings. Whilst changes to the Mental Health Act will prevent some autistic people from being detained, it will take years to come into force and we are concerned that alone it isn’t enough to stop the scandal of autistic people being wrongfully detained and stuck in mental health hospitals. A lack of progress on this issue, along with a social care system at breaking point, means too many autistic people don’t get the support they need early on, and can spiral into crisis and end up in hospital. We need urgent investment in social care and mental health services so that autistic people can access the right support in the community when they need it.

The recognition that Care & Education Treatment Reviews (C(E)TRs) have been inconsistent and recommendations are not always followed, is important.  However, we are concerned that the changes regarding C(E)TRs do not go far enough and that a maximum period between reviews of 12 months could be too long in many cases. Whilst recommendations will now need to be considered, it is not clear how promptly action must be taken and whether there are risks of delays in implementation. Nor is it clear at what point a delay in administering the recommendations from a C(E)TR could be considered a failure or deliberate refusal to accommodate.

Further clarity is also needed to understand how those currently detained will be discharged. The draft Bill does not address contributing factors that can delay discharge, including a lack of appropriate supported housing and difficulties with securing a care package in the community. We are concerned that there will not be enough viable community services for autistic people that should be discharged but are still in great need of support. More information is needed to understand how a duty for councils to provide community services will be fulfilled and funded in practice.
 

What changes and additional support do you think will be needed to help professionals and the third sector implement the proposals effectively? Will additional staffing and resources be required?
Wherever possible, autistic people should get the mental health support they need in their own community. If someone falls into crisis and is admitted to hospital, it is essential that treatment is delivered by staff who understand autism - in an environment that meets their needs – and for as short a time as possible. Our concern remains that without health and social care reform and adequate funding, councils will not be able to fulfil the duty to provide adequate community services and the NHS will not be able to ensure that there are enough staff in hospital settings with an understanding of autism. At present many councils simply do not have the resources available to cater to the needs of autistic people.

Alongside funding, specialist autism training must be prioritised. The ‘Oliver McGowan mandatory training in learning disability and autism programme’ must be rolled out to all staff as promised and as quickly as possible. This is crucial for both community and inpatient services. Without this we will continue to see care that is not adequately tailored to the needs of autistic people from staff that do not have the skills and expertise required to provide good enough care. 

The requirement for Integrated Care Boards to establish and maintain a risk register of individuals with learning disabilities and or autism that are at risk of hospital admission under Clause 2 new section 125D, will require the Secretary of State to set out in regulations the factors that make an individual at risk for admission. At present, it is unclear what this guidance will comprise. We recommend that the ICB risk register is broad in application and covers the entire act to guarantee maximum benefit. If the criteria for the risk register is too narrow this will limit opportunities to prevent the need for detention. A holistic view should be taken that recognises the impact of multiple factors including school exclusions and interactions with police. It is also crucial that the identification of risk is met with the offer of further support. To gauge the usefulness of this exercise further clarity is also needed on exactly how the collected data will be used to reduce the risk of admission.

In 2015 women made up 24% of autistic people and people with a learning disability in mental health hospitals, this has since risen to 31%[10]. More research is needed to understand the current gaps in care for autistic girls and women that leave them more prone to reaching crisis. This should be used to form the basis of an adequate supply of preventative care that can address the risk factors making autistic women and girls more likely to be detained. This reinforces the need to strengthen the draft Bills duties on the supply of community services to make sure that these are fit for purpose for autistic people of all genders. Further specific indicators of risk for women and girls should also be included in the Secretary of State’s guidance regarding ICB risk registers. This will be important for making sure that risk registers are as accurate as possible and reflect the diversity of autistic people, as well as for identifying any particular patterns that lead to the disproportionate detention of autistic women and girls.

Whilst learning disabilities and autism have often been grouped for the purpose of tasks like this, there are fundamental and important differences between the two. Data collection across the board should make sure to differentiate between autistic people without a learning disability and people with a learning disability. Whilst there are similar problems with a lack of appropriate care for both groups there are also unique factors for each that need to be considered. In particular there are a lack of services for autistic people without a learning disability and whilst the numbers of those with a learning disability in an inpatient setting have fallen there are now more autistic people without a learning disability in mental health hospitals than there were when reduction targets were set in 2015. Training needs to be cognisant of differences as opposed to suggesting a one size fits all approach.

 


How far will the draft Bill allow patients to have a greater say in their care, with access to appropriate support and avenues for appeal?

We welcome changes to strengthen access to tribunals and to increase the number of automatic referrals to tribunals through Clauses 27 and 28 of the draft Bill. This could have a positive impact on detecting the inappropriate detention of autistic people. However, there are concerns about the efficacy of the tribunal process for autistic people at present and so without further changes the impact of these amendments will be limited. Additional factors need to be considered to make this process accessible to autistic patients. Advocates should receive autism specific training to ensure that advice is applicable to autistic people and also delivered in an accessible way. All advocacy and tribunal processes should be adapted to recognise and accommodate the communication needs and preferences of autistic people, including those that don't communicate with speech, or only use limited speech. This would require all professionals involved in considering the cases of autistic patients to have sufficient autism-specific training, in order to make fully informed decisions about their care.

 

What are your views on the proposed changes in the draft Bill concerning those who encounter the Mental Health Act through the criminal justice system? Will they see a change in the number of people being treated in those settings?

Hospitals may often be safer or more appropriate settings than prison. However, there will still be circumstances where hospital is not a better suited environment for an autistic person, for instance if they do not have a co-occurring mental health condition. It is important then, that legislation around Part III of the Act is not used as a reason to discredit the need for prisons and prison staff to also strive for better understanding of autism and how to cater to autistic needs.

Clause 30 of the draft Bill’s introduction of a new form of supervised community detention for eligible patients detained under Part III of the act, could potentially be a useful change for some autistic people. But this will be contingent on the level of community support that can be provided and those involved in this stage of care having sufficient understanding of autism. It also depends on conditions not being too onerous and impossible to comply with.

We welcome the proposal to remove prisons and police stations as places of safety for those being assessed under the MHA. These environments are not generally suitable for autistic people in distress and can exacerbate it. Part of providing reasonable adjustments for autistic individuals involves ensuring that the environment doesn’t contribute to feelings of overwhelm or sensory discomfort.

It is important to add that the transfer of autistic people from prison to hospital requires successful identification of autism as well as a level of understanding from staff involved. For our soon to be published report on youth justice we asked criminal justice staff what the top barriers to making adjustments for autistic people were, 78.3% attributed this to a lack of awareness and knowledge about autism, making this the most common response. Over half also felt that identification was an issue. Furthermore, whilst the bill promises to impose a 28-day maximum time limit for transfer of patients with severe mental health needs from prison to hospital, steps for prison staff that identify a prisoner as autistic are not clear.

We would like to see a commitment to not only reduce detentions under sections 2&3 of the Act but also to reduce those detained under Part III of the Act. In order for this to be effective and without seeing autistic individuals held in prison, there needs to be a recognition of the factors that increase the risk of an autistic person coming into contact with the criminal justice system, including deprivation and prejudice.

 

Are there any additions you would like to see to the draft Bill?

Identification of autistic patients within the mental health system that have not yet been diagnosed must be a priority, especially considering the significant issues with diagnostic waiting times. Timely access to diagnosis is an important pillar for crisis prevention in the community. Furthermore, there is likely to be a cohort of autistic patients that are not yet represented within autistic inpatient statistics and data collections. This same cohort will not benefit from any of the autism specific improvements to the MHA without access to diagnosis.


16 September 2022

 

 

 

 

 


[1] Learning Disability Services Statistics - NHS Digital

[2] The state of health care and adult social care in England 2019/20 (cqc.org.uk)

[3] Learning disability services monthly statistics from Assuring Transformation dataset: Data tables - NHS Digital

[4] ‘It’s not that they don’t want to access the support . . . it’s the impact of the autism’: The experience of eating disorder services from the perspective of autistic women, parents and healthcare professionals: , Autism: The International Journal of Research and Practice | 10.1177/1362361321991257 | DeepDyve

[5] Ibid, p.42.

[6] Ibid, pp. 14-17.

[7] National Autistic Society working with Mind (2021), Good Practice Guide, p. 7.

[8]Learning Disability Services Statistics - NHS Digital

 

[9] The National Autistic Society, as part of the Disability Partnership, with the support of the Challenging Behaviour Foundation (2017). Tranforming Care: Our Stories.

[10] Learning Disability Services Monthly Statistics, AT: July 2022, MHSDS: May 2022 Final - NHS Digital