A SOLUTION FOR THE

STRUCTURE OF CARE FOR ADULTS WITH ASPERGER’S SYNDROME

IN THE NATIONAL HEALTH SERVICE

Professor Tony Attwood: -

“I really enjoyed reading the attachment.  I certainly endorse your explanations and comments and my own thoughts are that there needs to be separate and distinct provision for those with an Autism Spectrum Disorder (ASD), especially Asperger’s syndrome.  This division within an existing system needs to be specifically designed for those with an ASD with the development of expertise amongst a range of professionals.”

Lawrence Brewer                        Worcestershire adult Asperger’s Syndrome Parents
     January 2011
_____________________________________________________________________________



 
FIRST STEP FORWARD

A SOLUTION FOR A STRUCTURE OF CARE FOR ADULTS WITH ASPERGER’S SYNDROME

 INTRODUCTION

 Local National Health Service [NHS] and administrative bodies need clear direction as to the administrative route they should adopt.

 The NHS currently gives wide latitude as to how duties with regard to adults with Asperger’s Syndrome [AS] should be discharged. They will benefit from a firm indication of the structure to be implemented.

 
THE NEED FOR CLASSIFICATION

The difficult classification of AS must be determined, since discussions surrounding it continue to result in structural failure and often in non-allocation of resources.

The first barrier to service provision is that the NHS divides difficulties relating to the mind into two categories. These are:

• Learning disabilities, most often defined as having an intelligence quotient of below 70 points; and
   
• Mental illness, often referred to as psychiatric illness and covering conditions acquired after birth, amenable to medication and responding to therapies encouraging the patient to revert to a previous condition.

 However AS is:

• Seldom associated with a low intelligence quotient (diagnostic criteria includes average to above average IQ)
   
• Present from birth
   
• Of neurological origin
   
• Not responsive to medication; and
   
• Irreversible.

 AS is most often referred to as a Pervasive Developmental Disorder:
Pervasive – affecting many functions; Developmental – a failure in acquiring knowledge and understanding; Disorder – an interruption in normal mental functions. There has recently been a modish attempt to substitute “Condition” for ‘Disorder’. Examples of people with AS include a man from the West Midlands: ‘My problems are depression, loneliness, few friends and difficulty making friends, chronic insomnia and multiple chemical sensitivities (to foods, drugs, cleaning products, perfumes/deodorants, paints etc)’. The man is highly intelligent. AS is a disorder.

 Because AS does not fit into either of the NHS categories, the NHS often fails to provide services for people with AS. The Autism Act must therefore solve the mismatch between the NHS division and the features of AS.
 

CLASSIFICATIONS

If a choice of pigeon-holes is offered, nobody picks up the post.

There are diverging schools of thought: -

• The International Classification of Diseases and Related Health Problems (ICD) defines AS as a mental disorder.
   
• The Diagnostic and Statistical Manual of Mental Disorders (DSM) defines AS as a mental disorder.
   
• Within the past year the American Psychiatric Association in preparation of the new DSM, has stated that AS should be included within the autistic spectrum, which comes under their heading ‘Developmentally Delayed’.
   
• The British National Autistic Society refers to it as a mental disorder.

 On the other hand: -

• Some people say that AS is a physical, or functional condition of the brain in that the brain and its neurons are ‘wired’ differently; there is irrefutable research to support AS’s cause being physical rather than mental.
   
• The National Autistic Society says ‘Autism is not a mental health condition’.
   
• The Canadian Society says that AS is ‘not a mental health issue per se’ and that AS people see themselves as ‘different’ rather than having a disorder.

 There has been much discussion of the classification over many years, much of it semantic and not relevant to a pathway to treatment and support. Given the unusual and varying characteristics of AS, no decisive outcome is likely.
 

The Requirement

Unless the guidance documents for the Autism Act solve the mismatch, people with AS will continue to fall between the two stools of learning disability and mental illness, and risk continued isolation in no-man’s land.

The requirement is to make a decision as to where AS lies, within the NHS classifications. There are four key reasons:-

• Structural ease

A very large organisation such as the NHS can only function successfully if a disorder is placed in a category, and if responsibility for it is allocated to professionals specifically charged to attend to it. Results will be at best patchy if guidelines are loose and can be widely interpreted.

• Appropriate treatment

The need to provide a clear service pathway is reinforced by the current experience of people with AS, who are currently passed from one ill-qualified service-provider to another.

• Clear direction

A local NHS manager is burdened with day-to-day procedures and budgeting and should be relieved from semantic discussion. In times of economic austerity the manager is tempted to clutch at the straw called ‘inactivity’ if there is a hint of get-out from statutory duty or legislative vagueness.

• An end to delay

In ‘Towards Fulfilling and Rewarding lives’, the first guidance document issued under the Autism Act, the section ‘Regional planning and local planning’ says that the deputy regional directors are responsible for ‘ensuring that from June 2010 there are strategic planning mechanisms/ processes in place, with meaningful representation from adults with autism and their carers’; in the Midlands for example this has not been achieved [December 2010] and failure may be ascribed to directors’ not knowing where to commence their strategy.
 

The Choices

An argument can be made against any standard classification. We must make a decision that ends the argument. If we cannot decide on this, what hope is there for an adult with AS?

We must answer the question “Where should responsibility be placed, for the care of adults with AS?”.

• Place AS responsibility within physical medicine? The brain, wherein the origin of AS symptoms lie, is part of the physical anatomy; but the symptoms of schizophrenia also can be traced to chemical imbalances within the brain and schizophrenia is patently a mental health condition. There is next to no physical help that can improve AS sufferers. There is no appropriate medication.
   
• Place AS responsibility within Learning Disability services? While people with AS indeed fail to learn in certain areas, many medical opinions state that AS by definition may not occur in company of an IQ below 70. Clinicians specialising in learning disability do not have skills appropriate to high IQ patients and low-IQ interventions can harm AS patients. The ‘IQ<70’ definition does not cater for the high intellectual capacity of most people with AS.
   
• Place AS responsibility within social services? Social workers do not act as primary caseload holders for people with a mental disability. AS is a medical condition and social workers are not the medically trained or qualified. The availability of most ‘social care’ is means-tested so adults with AS who achieve employment would be excluded.
   
• Place AS sufferers in a service chosen at the discretion of a local authority? Locality makes no difference other than that of population-size, to AS service provision.  The 2006 Department of Health [DoH] paper ‘Better Services’ advised that local services should choose the most competent staff to provide what an individual requires; there has been no resulting improvement for adults with AS in many English regions. In many counties there remains no service whatsoever. It is unreasonable to leave local managers to struggle with the classification of a complex condition. The successful Northamptonshire service is uncomfortably labelled ‘Transition and liaison’; the successful Liverpool service comes under ‘Learning disability’: both are inappropriate.
   
• Place AS responsibility within a mental health service? AS it is not a ‘psychiatric’ condition, in the same sense of the word as schizophrenia, depression or anxiety. The approach of psychiatric staff often includes a ‘recovery’ ambition which is contrary to the lifelong nature of AS. The association of ‘mental health’ with the epithet ‘psychiatric’ would not be welcomed by people with AS.
   

Recommendation

To solve the mismatch, AS must be categorised within a structure. Failure firmly to locate it within a framework will stymie the Autism Act and risk continuation of the failures of the past years.

There is evidence to show responsibility should lie within a mental health service: -

• The American Aspergers Society says that AS conditions have been shown to “improve dramatically within the mental health arena”.
   
• In Australia, Tony Attwood’s clinic now has “a team of psychologists who specialise in the diagnosis and treatment of people with AS”.
   
• In Germany, Aspies e.V is “negotiating with service providers for specialised medical and therapeutic care for its members”.
   
• In UK, many people with AS are found to have been “relieved to know that they have a diagnosed disorder rather than just being a ‘misfit’; it helps them to work with the disorder and protect themselves”.
   
• Access to psychiatric services - AS often occurs alongside psychiatric illnesses and these will be most easily addressed within a mental health framework. Research tells us that people with AS are disproportionately at risk of developing mental health difficulties. Locating services within a mental health context potentially allows the use of existing skills held by clinicians for strategies such as anxiety management to reduce the likelihood of mental health difficulties.
   
• Categorisation within mental health will help avoid the denial process some AS sufferers go through – resisting input to their thought processes and behaviour because ‘there’s nothing wrong with me’.
   
• AS people always respond to mental health counselling provided that the therapist, counsellor or mental health provider is familiar and at ease with working with an AS patient. Established location of a service and clinician will result in positive response and outcome.
   
• A key approach to current thinking on AS service-provision is the structure of diagnosis. It is unthinkable to make a clinical diagnosis available to a person with AS, and then entirely discharge him from the remit of the service.

A dedicated mental health AS specialist will network with fellow-clinicians, as well as with social services for help with housing, employment and administration. 

 

Conclusion

Experience continues to show that local authorities and bodies struggle to establish a framework for AS services. No useful purpose is served by offering reference to local needs, when the service-need does not vary by locality.  The first step forward is to give prime responsibility for adults with Asperger’s Syndrome to a clinician within local mental health services.  DoH guidance should make this clear in implementing the Autism Act.

Lawrence Brewer
January 2011