Autism support that saves hundreds of millions of pounds

Petition point 1: To have the Scottish Government give direction on what public service provides autism support for autistic people who do not have a learning disability and/or mental disorder.

Petition point 2: To have the Scottish Government allocate investment for autism support teams in every local authority or Health and Social Care Partnership in Scotland as part of a spend-to-save-scheme highlighted within the Microsegmentation Report, overseen by an Autistic Commission Board.

Learning disability services will not provide support to autistic people if they do not have a learning disability. Only 33% of autistic people have a learning disability, therefore 67% of autistic people do not have a learning disability. It is easier for the 33% of autistic people to access support through learning disability services, but it is extremely difficult for the other 67% of autistic people to access any support. The reason for this is because of the confusion between the legal and clinical interpretation of autism. To help understand this confusion, it is useful to explore the following question: Is autism a mental disorder?

It is clinically understood that autism is not a mental disorder, instead, it is a lifelong neurodevelopmental disposition.

So, if autism is not a mental disorder, then why are autistic people referred to mental health services for support? There is a perception that autism is covered within mental health legislation in Scotland. However, the word autism (and/or autistic spectrum/Asperger’s) is not mentioned or referenced in The Mental Health (Care and Treatment) (Scotland) Act 2003 (the Act), associated guidance, and/or codes of practice. If it is not referenced in any part of the Act or associated guidance, and that clinical evidence-based practice states autism is not a mental disorder – how can autism be covered within the Act?

The following two points summarise why autistic people are often left without support:

• Social services understand autism as mental disorder as defined within mental health legislation and will generally refer to mental health services to support.
• Mental health services clinically understand autism is not a mental disorder and will not provide autistic support.

This explains why autistic people are often signposted to a variety of services, which usually results in no support. This was highlighted in the recent Children and Adolescent Mental Health Report (CAMHS, discussed later). This report highlighted that autistic people are often left with no support because mental health services do not support solely autism needs.

Therefore, there needs to be clarity from the Scottish Government on what service(s) should provide autism support:
• If autism is covered within mental health legislation this should mean mental health services provide practical based support at time of need. Or,
• autism is not covered within mental health legislation; it should then be social services who provide support at time of need.

Until this is clarified, autistic people will often be denied access to support - this must change.

This petition supports the view that autism should not be considered as a mental disorder or under a learning disability definition, and therefore requests funding to be made available to create autism support teams for autistic people across Scotland. This would provide support for people when they need it the most. It would also stop people being unnecessarily processed through the mental health system.

The Microsegmentation Report was a result of Recommendation 5 of the Scottish Autism Strategy. This report was a meta-analysis of the financial impact of autism undertaken by Strathclyde University. The report highlights how the economic cost of autism can inform strategy and planning for Scotland. The report states ten recommendations which would not only provide best outcomes for autistic people, but would save the Scottish Economy hundreds of millions every year. The Report states if the ten recommendations were implemented with just 1% efficiency - it would save the Scottish Economy £22million per year, 10% efficiency would save £220 million, 20% efficiency £440 million and so on.

These ten recommendations could be implemented across Scotland if there was autism support teams created for every local authority or Health and Social Care Partnership. The budget for mental health in Scotland is £1.1 billion and rising. Is there a way that some of this money could be used to create autism support teams for every area in Scotland? These teams would remove unnecessary pressure off mental health services, social services and primary care, but, most importantly autistic people would get support when needed. These support teams could easily implement 30% efficiency targets of the Microsegmentation Report, resulting in savings of over £440 million per year.

Therefore, this petition asks the Scottish Government to consider actioning the following petition point:

1. To have the Scottish Government give direction on what service provides autism support for autistic people who do not have a learning disability and/or mental disorder.

2. To have the Scottish Government allocate investment for autism support teams in every local authority/Health and Social Care Partnership in Scotland as part of a spend-to-save-scheme highlighted in the Microsegmentation Report, overseen by an Autistic Commission Board.

 

 

Petition Background

Petition Item 1: To have the Scottish Government give direction on what public service provides autism support for autistic people who do not have a learning disability and/or mental disorder.

Learning disability services will not provide support to autistic people if they do not have a learning disability. Only 33% of autistic people have a learning disability, this means that 67% of autistic people do not have a learning disability. It is easier for the 33% of autistic people to access support through learning disability services, but it is extremely difficult for the other 67% of autistic people to access any support. The reason for this is due to the confusion between the legal and legal clinical interpretation of autism. To help understand this confusion, it is useful to explore the following question: Is autism a mental disorder?
It is clinically understood that autism is not a mental disorder, rather it is a lifelong neurodevelopmental disposition. So, if autism is not a mental disorder, then why are autistic people referred to adult mental health teams and Children Adolescent Mental Health Teams (CAMHS) for support?
There is a perception in Scotland that autism is covered within The Mental Health Care and Treatment Act 2003 (Scotland). However, the word autism (autistic spectrum/Asperger’s) is not mentioned or referenced in any part of the Act or accompanying guidance … not even once. If it is not referenced, how can it be covered within the legalisation? To answer this question, we need to look at the history of autism and mental health law in Scotland.

 

 

Overview of autism in mental health law

Autism was initially misunderstood as a mental illness. Fortunately, clinical opinion now understands that autism is a neurodevelopmental disposition. Below, is a brief overview of how clinical opinion of autism has developed:
1908: It was first recorded that autism was used to describe schizophrenic patients. 1967: Autism was classified under Schizophrenia in the International Statistical Classification of Diseases and Related Health Problems [ICD]. 1980: The Diagnostic and Statistical Manual of Mental Disorders (DSM) III, made the formal distinction between autism and schizophrenia. Autism was labelled “infantile autism”, giving the impression that autism only affected children. However, at this point the DSM wasn’t as influential in the United Kingdom as it is today. 1983: The new Mental Health Law is passed in UK Parliament: The Mental Health Act 1983. It was understood in the UK that autism was covered in the 1983 Act because autism was classified under schizophrenia within the ICD since 1967. In 1987: The DSM-IIIR replaces "infantile autism" with a more expansive definition of "autism disorder," and includes a checklist of diagnostic criteria: finally removing autism from schizophrenia. 1994-2000: the DSM and the ICD expand the definition of autism and include Asperger’s syndrome, highlighting autism isn’t a mental disorder, rather a social communication difficulty. 2013: the DSM-5 folds all autism subcategories into one umbrella diagnosis of ‘Autism Spectrum Disorder’ (ASD).

It is defined by two categories:
• impaired social communication and/or interaction and
• restricted and/or repetitive behaviours (including sensory).
Therefore, it is now clinically understood that autism is not a mental illness or disorder.

 

So why today, is autism still misunderstood as a mental disorder?

Under devolution, the Scottish Government had responsibility to create specific legislation for mental health law in Scotland. The Millan Committee was set up by the Scottish Executive in 1999 to make proposals for mental health legislation for the newly devolved Parliament.
The Millan Committee made various recommendations for the new Mental Health Act for Scotland. In relation to autism it was debated whether it should be included in the new Act. The Committee recommended that autism should be covered in the new Act under the definition of learning disability.
The Committee recommended (Recommendation 4.9), that a wider definition of learning disability should include autism, and that this wider definition should be included in the codes and guidance of the Mental Health Act 2003. This recommendation clearly did not reflect the clinical developments of autism since 1983: that autism is a neurodevelopmental disposition and not a learning disability or mental disorder.
Thankfully, Recommendation 4.9 (Learning disability should include autistic spectrum disorders’ under a wider definition within the Act & guidance), was never enacted into the Mental Health (Care and Treatment) (Scotland) Act 2003. The word autism is not referenced in the 2003 Act (not even once), nor is it mentioned in any of the codes or guidance, even as part of a wider definition of learning disability.

Mental health (Care and Treatment) (Scotland) 20003, Sec. 328:
(1) Subsect to subsection (2) below, in this Act “mental disorder” means any –
(a) Mental illness
(b) Personality disorder; or
(c) Learning disability

If clinical opinion is unanimous that autism is not a mental disorder/illness or learning disability, and if the word autism is not referenced anywhere in the Act, codes or guidance - how can autism possibly be covered within the Act?

Why was autism not considered under the definition of learning disability of the Act?
As early as the 1990’s it was understood that roughly 60-70% of the autistic population had average or above average intelligence, therefore meaning, autism could not be considered under the definition of learning disability. The law drafters for the Scottish Executive knew that autism could not be covered within the 2003 Act under the definition of learning disability, hence why it was never referenced in the Act to begin with … autism is simply not in the Act.

How can the Act be used in the lives of autistic people if the word autism is not even referenced within the legislation?

How many autistic people in Scotland have had the Act used in their lives for no other reason than just being autistic? Has the Act been misused against autistic people? Is it even lawful to use the Act for autistic people who have no mental disorder or learning disability?

Some people believe that autism is covered within mental health legislation because autism is mentioned in the and ‘Statistical Manual of Mental Disorders’ (DSM) and ‘International Classification of Diseases’ (ICD).

Therefore, if this logic is correct it would mean other dispositions highlighted within these manuals would also be covered within mental health legislation. Some of these other dispositions are ‘walking into a lamppost’, ‘problems in relationship with in-laws’ ‘spelling disorder’ and ‘erectile dysfunction’. This hopefully highlights the fallacy that just because something is mentioned in the DSM or ICD does not automatically mean the person is subject to mental health legislation.

People then say, “but you would not use the Act if the autistic person did not have a mental disorder or learning disability’”. If this is the case, then why does autism have to be perceived as being covered in the Act if the Act can only be used when the autistic person either has a mental disorder or learning disability? Does this not mean that autism is not covered in the Act, if it can only be used if there is a mental disorder and or learning disability present? Is this not the same as every other person in Scotland? As you will understand, autism on its own is not covered within the Act.

There is a widespread belief that autism is covered within the Act as it protects autistic people, however, this is not evidently true.

There may be some autistic people who have been, or will be, involved within the Criminal Justice System. Some autistic people may have been guilty of criminal intent and will have therefore been subject to prosecution. However, some autistic people may have been (or will be) involved in criminal behaviour without criminal intent.

It may be difficult for a subset of autistic people to understand some social norms, therefore limiting their understanding to comply within certain laws. There are possible reasons for this, for example, an autistic person may have had appropriate sex education but may simply be unable to understand social rules about consent in real life; in certain situations this person may not have understood that their behaviour was unlawful. The person may be able to stand trial, but in effect, the responsibility for this offence may lie partly with the person and partly with society as the education was not in a format that allowed for an autistic disposition to understand (this example was taken from the ‘Independent Review of Learning Disability and Autism’ Report, discussed later). Criminal punishment and a possible custodial sentence may seem harsh in these circumstances.

If the nature of the behaviour (perceived criminal behaviour) met the ‘serious harm test’ (this is not harm to self but harm to others), and it was believed that the person’s ‘mental disorder’ would mean they would not understand the criminal prosecution against them, they may then be put through the mental health route instead of the Criminal Justice System. This is when an autistic person could be subject to the Mental Health Act under the definition of ‘mental disorder’ within the context of The Criminal Procedure (Scotland) Act 1995. This is when an autistic person may be held on an Interim Order and subsequent Restriction Order without time limit. This may seem harsh, but is this a better option than being processed through the Criminal Justice System? Some autistic people and their families do not think so. There has been media coverage about some autistic people being detained without time limit even though they have never committed a crime. One of the most high-profile cases is Kyle Gibbon (https://www.bbc.co.uk/programmes/p07m8f1s Kyle’s family state he has never committed any crime but has been ‘locked up’ in Carstairs State Hospital for 13 years with no discharge date and claim he is a victim of the current system.
MSPs Alexander Burnett and Monica Lennon have demanded answers from the government. Mental Health Minister Clare Haughey has said, ”Getting people the right support they need is a hugely important issue that needs discussing and diagnosis of a behavioural disorder itself is certainly not cause for detention … We are committed to review existing mental health care and treatment legislation to determine if new measures are necessary to fulfil the needs of people with … autism”.

Kyle is still in the State Hospital.

There are another eight autistic people being held at Carstairs State Hospital. The families believe the forensic setting of the State Hospital has traumatised their loved ones, and that the environment and approach exacerbates the challenge of discharge from the system. The following is taken from Independent Review into the Delivery of Forensic Mental Health Services (August 2020), “There are no central reports currently available to say how many people with autism are receiving care and treatment in the forensic system. There is, however, a known lack of specific provision and forensic pathways for people with autism. Forensic services are mainly set up for those with a mental illness or learning disability. Most staff groups acknowledged a lack of expertise about autism … The same family members expressed disappointment in the level of care provided in the community as it has not delivered what was promised”.

Access to specific autism support is not available within the forensic system in Scotland (low, medium or high secure units in Scotland for people on such Restriction Orders although there is this provision in England), therefore, it is often hard for autistic people to learn life skills, develop the experience and awareness needed to be successfully integrated back into their community.

This is why it is important to have autism support teams in every area of Scotland, as these support teams would have hopefully prevented such scenarios from happening to begin with. Also, these teams would help by providing the support needed to help autistic people be discharged from a secure facility and supported back into their communities safely.

The reason for wanting autism covered within the Act was probably a result of good intentions, however, sadly it has caused harm for two reasons:

• The confusion between the legal and clinical definition of autism prevents autistic people without a learning disability get support.
• Lack of autism support in the community and within some forensic prevents a successful discharge from Restriction Orders.

The Convention on the Rights of Persons with Disabilities (CPRD) was effective from the 3rd May 2008. As highlighted in the CPRD, to state someone has a mental disorder as a result of a disability is unlawful, therefore, the definition of autism as a mental disorder breaches CPRD. To say autism is covered in the Act could therefore be perceived as institutional discrimination and prejudicial against every autistic person in Scotland.

Just because you are autistic should not mean you are automatically subject to mental health legislation, yet that is fallacy we have in Scotland which is preventing autistic people getting access to support. This undermines the Human Rights of autistic people. Also, the Mental Health Act is also referenced in 25 other Acts within Scottish legislation which could impact on an autistic person for no other reason than simply being autistic.

There will be some autistic people who have either had a mental disorder or learning disability who have been subject to the Act, but there will have been other autistic people who did not have a mental disorder or learning disability also being subject to the Act for no other reason than just being autistic.

The confusion caused by the legal and clinical interpretation of autism has prevented autistic people getting access to support.

This confusion was highlighted in the ‘SPICe Briefing Autism Spectrum Disorder’, March 2017, by Roseannah Murphy: “Although ASD is a developmental condition rather than a mental illness or learning disability the term ‘mental disorder’ has in practice included people with ASD … In May 2016, the Mental Welfare Commission and the Scottish Council for Learning Disability opened a scoping consultation on the format of the forthcoming review of autism in Scottish mental health legislation. The scoping consultation acknowledged that as ASD is not explicitly listed as a category of mental disorder in the 2003 Act there has been “some confusion among professional care providers about how the 2003 Act should be used for people with ASD”.

There was a review concluded in Scotland (December 2019) as to whether autism should be removed from the 2003 Act. This review was called ‘The Independent Review of Learning Disability and Autism in the Mental Health Act’. The review team have recommended that in future autism should not be defined as a ‘mental disorder’ under the Mental Health (Care and Treatment) (Scotland) Act 2003, or in other mental health law.

This review has forwarded their proposals to the Scottish Government and wider Scottish Mental Health Review chaired by John Scott QC. The review by John Scott QC may take several years before any changes will be realised. Therefore, until then the status quo will result in continued years of no support for autistic people who do not have a learning disability.

There still is the perception that autism is covered within the Act which causes confusion in Scotland in relation to providing autism support. This confusion results in autistic people and families being denied support from services.

Mental health services will support people with a mental disorder, but not solely autism because this would not be viewed as a mental disorder. This was highlighted in the recent Rejected Referrals Child and Adolescent Mental Health Services (CAMHS): A qualitative and quantitative audit:
https://www.gov.scot/binaries/content/documents/govscot/publications/research-and-analysis/2018/06/rejected-referrals-child-adolescent-mental-health-services-camhs-qualitative-quantitative/documents/00537523-pdf/00537523-pdf/govscot%3Adocument/00537523.pdf

Some extracts of the report:

• "The referring issue is not a mental health issue but rather a behavioural issue, related to an ASD diagnosis …
• “I remember a bit from the letter that says that my daughter didn’t have mental health problem [instead it was autism]” …
• “His anxiety is a result of his autism and not understanding the world around him and it’s not something that they can help with.”
• “some parents being told that CAMHS could not help with an apparent behavioural, emotional or mental health issue because of the ASD diagnosis. This left families feeling there was nowhere for them to turn”
• “I was devastated, honestly, and I was very, very upset for her and I was angry that she had been discriminated against because she had a name, a title against her, autism spectrum disorder and that was somehow stopping her from getting a service”.

All of what is highlighted in the CAMHS report is mirrored in adult mental health.
When autistic people and families go to other services for support (Social Work, GP’s) they are re-directed back to mental health services. This is due to the fallacy that autism is covered within mental health provision. This explains why there Is so much frustration with mental health services within Scotland in relation to autism. The problem is not mental health services: it is the lack of ongoing practical social support for autistic people.

Think of how many autistic people and families have been denied access to support due to the confusion around mental health law. There must have been hundreds, if not thousands of autistic people who have suffered. there must have been unnecessary deaths and suicides due to this confusion and lack of support. There will be more pain and suffering if things do not change.

Autistic people cannot wait years on reform through the John Scott QC ‘Scottish Mental Health Law Review’ and subsequent Parliamentary process. This is why this petition requests the Scottish Government to invest in autism support teams for every local authority or Health & Care Partnership.

Daily living can be challenging due to the nature of an autistic disposition. Without appropriate support, autistic people will experience poor life outcomes and poor health, this explains why there is a higher prevalence of mental health issues within the autistic population.

If autism needs are not supported on a daily/weekly basis, autistic people will be vulnerable to develop a mental illness. It can be very difficult for mental health teams to provide psychological interventions for the mental wellbeing of autistic people when their practical needs remain unsupported. This was reflected in the AMASE report ‘Too complicated to treat’? (Autistic Mutual Aid Society Scotland). This report highlighted that some mental health services have reported that autistic people are too difficult to treat within a mental health model. The problem is that autistic people need access to practical daily support as this is often the source of anxiety; there is no psychological interventions for autism support. Autism support is essential, because without it, a mental illness will be more likely which will be more difficult to treat due to the neurological diversity of the autistic brain.

Petition item 2: To have the Scottish Government allocate investment for autism support teams in every local authority or Health and Social Care Partnership in Scotland as part of a spend-to-save-scheme highlighted within the Microsegmentation Report, overseen by an Autistic Commission Board.
The Microsegmentation Report was funded by the Scottish Government as a result of the Scottish Strategy for Autism: Recommendation 5, “on (what) the economic costs of autism is”.

The Report looked at the costs of autism and concluded that some of the costs were ‘escapable’, explaining with the right support local authorities and NHS boards could save money.

The Microsegmentation Report states the following 10 recommendations be implemented for every area in Scotland to promote the best outcomes for autistic people while also saving money.

The 10 recommendations are:

1. Use the prevalence figures of 1.035% (roughly one in every 100 per population is autistic) to plan for service provision. Therefore, meaning the estimated number of autistic people in Scotland is just over 50,000.
2. Use the ‘Matrix’ to help future planning.
3. Access to multi-disciplinary teams to identify and assess autistic people.
4. Early intervention support.
5. Supported employment supports.
6. Family training.
7. CBT approaches made available for autistic process.
8. Specific autism training for CBT therapists.
9. Personalised approaches for autistic people.
10. Regular health checks.

The petition asks the Scottish Government to make funding available to create autism support teams in every local authority or Health and Social Care Partnership in Scotland as part of a spend-to-save-scheme highlighted within the Microsegmentation Report, overseen by an Autistic Commission Board. These proposed teams would implement the 10 recommendations across Scotland.
How much to invest in autism support teams? The answer to the questions is – the bigger the investment in support teams, the bigger the efficiency savings will be.
If the 10 recommendations were implemented with 1% efficiency, this would save the Scottish Economy £22 million annually. If there was a 10% efficiency this would result in £220 million being saved annually, 30% efficiency would result in £440 million being saved annually and so on.

There is a big focus to create world class mental health support in Scotland, this is reflected in the budget for mental health currently at £1.1 billion (This is a spend of one thousand one hundred million per year).

What if some of this budget was used to create autism support teams?
Spending some of this money on autism support teams would create a care pathway for autistic people out of mental health services. If mental health services have historically been the services to provide support, then some of this budget was always allocated for autism support anyway. If some of this money was used to create support teams, autistic people would get the right support at the time they needed it and it would also free up much needed capacity within the mental health system.

For example, say £70 million was ringfenced per year to create autism support teams (32 local authorities x £2m investment = £64 million, plus £6 million to have an Autistic Commission Board oversee this network). Every mental health service would signpost the autistic person to each local autism support team. Imagine how much capacity this would create in mental health services? This would allow mental health services to focus on mental health, not autism.

Having these support teams within Health and Social Care Partnerships would make much more sense than mental health services using the allocated money to support autism needs. This is because of the clinical governance of such mental health teams. Autism support usually requires a ‘Systems approach’ (social situations, education, relationships, employment, social care, housing and primary care). Mental health services would not have the capacity to engage with all these different services, this is probably why clinicians have told autistic people that they are too difficult to treat with psychological interventions only (AMASE Report ‘Too difficult to treat’?). This why the creation of specific autism teams working within the Health and Social Care Partnerships would be successful in implementing the 10 Recommendations of the Microsegmentation Report - realising the savings that could be made while autistic people get the support when they need it.

The £70 million investment would save hundreds of millions in the Scottish Economy every year. Does this need to be new investment, or simply realigning some of the mental health budget? If autism was considered part of the mental health budget due to the fallacy of autism being defined within mental health legislation, then it makes sense to use some of this already committed mental health spend. Using some of this budget to create autism support teams will produce a return on the investment. Say these teams achieve a 30% efficiency (which is an easy target), this would save over £660 million every year in Scotland. By simply realigning already committed budgets we could make these savings without any additional spending.
These autism teams would be the automatic referral route for social work teams, police, GP's and mental health teams. It would also be open for self-referral from autistic people. This would guarantee that every autistic person/family would be offered tailored support at the time they needed it the most. This will stop the nightmare of autistic people being lost in the mental health system without practical based support for their autistic needs.

I stated £70 million per year even though there are only 32 local authorities (£64 million spend). The additional monies would create a National Autistic Commission Board for autistic representation based on a human rights approach. This Commission would oversee the network of these support teams, share best practice and be a leading movement globally based on research and support. The Commission would be able to advocate for changes for things such as additional support needs, respite, assessments, adequate housing needs and anything else that was needed. The additionally money could be used to develop new models, raise awareness and provide opportunities to make Scotland the leading country in supporting autistic people and families.

Scotland has a lot of rural communities which can be very problematic for services to get the expertise & professionals to help local autistic residents. Having the Commission with a vast network covering all of Scotland, could provide rural areas with access to professionals at the times they needed it the most, therefore meaning autistic people in these rural areas are still getting access to expertise regardless of their geographical area. The Commission could use the collective autistic experience to develop new support ideas, even having a panel of autistic people to provide advice and guidance for complex care needs throughout Scotland.

Another issue is diagnosis, assessment, waiting lists and access to basic autism training. In some areas of Scotland people have complained that it has taken years to get a diagnosis. Evidence-based practice tells us that early intervention is essential in supporting autistic people. There are sensitive periods of development within a child’s life, the earlier the intervention the better chance the child will have in life. Having these teams in place will be able to fast track diagnosis and provide support to children for these sensitive periods of development. Having the teams in place would dramatically reduce these waiting times. Support could also be available for autistic curious families; this means people will still get support which is beneficial while waiting on a diagnosis.

Another issue for autistic people is the financial burden of accessing good autism advice and training. For example, one autistic man informed the petition that he had been waiting on a diagnosis for over six months, and when he asked how much longer he had to wait, he was told by an NHS employee that it could easily be another six months, but if he wanted, he could go private with that NHS employee by paying £1,500 for an assessment which could be done in one day, and, this employee could also provide post diagnostic support and training after diagnosis at the cost of £100 per hour. This approach goes against the standards of assessment the Scottish Government is trying to impose. Loosely speaking, where is the clinical governance for private practice in relation to autism assessment? This type of unethical practice needs to stop. Autistic people and families should have access to diagnosis, post diagnostic support and training free of charge at the time of need – the teams highlighted in this petition could help make that happen.
These teams could also provide support for people that self-identify with a disposition of PDA (Pathological Demand Avoidance). Unfortunately, most mental health and social services do not consider PDA to be a real thing and therefore will not provide support. Also, there is little awareness or understanding of this part of the autism spectrum, these teams would be able to change that.

 

The Independent review of Learning Disability and Autism in the Mental Health Act has set out various recommendations, some of these are:

• Autism should be removed from Mental Health Act.
• Safe places for autistic people during a crisis.
• Human rights assessments with communication and sensory needs understood.
• Duties on public services to ensure that autism is understood in line with Convention on the Rights of People with Disabilities (CPRD).
• Statement of rights for autistic people overseen by a Commission Board.
• That the law clarifies duties on NHS boards, Health and Social Care Partnerships and local authorities to provide reasonable adjustments to health and social care services. This should include clarification of duties to give access to services, including screening and related services.
• Support to be provided by ‘Co-ordinators’ with the ‘rights, wills and preferences’ central to legal agency, and/or within the Criminal Justice System.
• Various other recommendations.

 

The following has been taken directly from the report:

“In addition, we recommend a duty in law on Scottish Government to ensure central provision of autism expertise, including lived experience, which enables local capacity building. We recommend duties in law for Health and Social Care Partnerships to employ professionals who have specialist understanding of autism. It will be important to include autistic people and their organisations in the development and governance of local services …
Professionals with specialist understanding of autism will be needed, to ensure that services can meet the needs of these groups of people. These professionals will also be needed to help to make universal design and reasonable adjustments possible. We are not making specific recommendations on how services should be provided locally. Instead, in many sections of this report, we make recommendations on duties that should be put in law for public authorities such as Health and Social Care Partnerships. For example, in future, some services may continue to be specialist … autism services, … What matters is that individuals’ rights are fulfilled, in line with their will and preferences, and within their own community”.

Having such teams in place would also help overcome the challenges of autistic people in ‘Out of areas placements’ as highlighted in the ‘Coming Home Report’ (https://www.gov.scot/publications/coming-home-complex-care-needs-out-area-placements-report-2018/pages/8/ The proposed autism teams (Co-ordinators) would be central in helping bring autistic people back to their local community. This was also highlighted in the Independent Review of the Mental Health Act,”The review also recommends investment in community-based professionals, so that people can remain in the community, or move back to the community from hospital as quickly as possible”.

The ‘Independent review of Learning Disability and Autism’ recognises that there is a need for some immediate action. The review identifies where action could begin. Some of the review’s recommendations will need to take effect after the current independent review of mental health and incapacity legislation, which is led by John Scott QC. There will need to be a process of transition which must include clear deadlines for change in law and for human rights issues to be resolved, therefore we should start the process of change before the end of the Scottish Mental Health Review.

 

Conclusion

The petition to request the Scottish Government to provide funding for local authorities or Health and Social Care Partnerships to provide autism support teams.
These teams would help implement most of the recommendations of the ‘Independent review of Learning Disability and Autism in the Mental Health Act’ while waiting for the outcome of the wider Scottish Mental Health Review.
If the Scottish Government provided funding, then autistic people & families would be getting access to support when they needed it.
The support provided would relieve capacity on systems such as mental health, social work, significant reduction in NHS primary care, employment support, further & higher education and education.

This petition, if supported would save hundreds of millions within the Scottish Economy.

Simply put, autistic people and families cannot wait for the years it will take the wider Scottish Mental Health Review to provide material change, people need support now.

For good reasons there was the intention that autism be understood as a mental disorder under the definition of a learning disability within the 2003 Mental Health Act. However, with hindsight we can now understand that the disparity in the legal definition and clinical definition of autism has resulted in autistic people and families often being denied access to support. This needs to change as soon as possible.

 

Autism support: time to get it right