Autism and Mental Health - Seven Deadly Points.

In the light of the recent publication of the Scottish Government's new Mental Health Strategy, which makes no mention of previous calls for review of the inclusion of people with Learning Disabilities within the provisions of the Mental Health Act, Autism Rights has put together this information leaflet as part of our `Call for Action` to take people with Learning Disabilities and Autistic Spectrum Disorders (ASD) out of the provisions of the Mental Health Act.

Please read our `Seven Deadly Points` detailing why the mental health system is such a threat to people with ASDs.

1. No investigation by the Mental Welfare Commission (MWC) of the numbers or situation of people with ASD who are currently being `treated` under the Mental Health Act. The MWC will not undertake an investigation, on the basis that people with Autistic Spectrum Disorders are not classed as a `client group`.

2. No objective criteria is yet used by the the Mental Welfare Commission (MWC) to assess which individual cases they will investigate (their website is wholly misleading in this instance, as it implies that they comply with every individual request for investigation.)

3. No reliable statistics, and none at all in some cases, on the numbers of people with Autistic Spectrum Disorders held in mental health institutions in Scotland, or those being `treated` as outpatients by Scottish health boards. Given the fact, recognised by the MWC in its own census, that people with Learning Disability spend on average over twice as long in mental hospitals than those with purely a mental health diagnosis, this should be deeply concerning, because it means that people with LDs (some people with ASDs will be included within this category) are exposed to the life-limiting effects of psychotropic drugs over a much longer period of time. The life expectancy of people with `mental disorders` (mental illness and mental disability combined) is 10 years less than the general population. The Royal College of Psychiatry has said that people with ASD are often caught up in the mental health system simply through an absence of care provision for adults with ASD.

4. NHS Scotland's Quality Indicators for Learning Disabilities may as well not have been written, as they are not complied with in any way, shape or form - witness the struggles that parents are currently facing, trying desperately to get health authorities and professionals to comply with these guidelines, to provide acceptable levels of medical care for their sons.

5. People with Learning Disabilities, including those with Autistic Spectrum Disorders, are currently included within the provisions of the Mental Health Act under the definition of `mental disorder`, irrespective of whether or not they have a mental health problem, whereas people who are addicted to drugs or alcohol are specifically not included within the provisions of the Act. Given all of the above, this is entirely discriminatory towards people with mental disabilities. As both the Millan Committee and the McManus Review backed a review of this situation, the consultation on the Mental Health Strategy for Scotland: 2011-15 should have included consideration of this, but did not. The finalised 2012-15 Strategy likewise fails to address this issue.

6. There is never any official consideration of the reasons behind the supposed `co-morbidity` of mental health problems or illness with Autistic Spectrum Disorders, and yet the reasons for this are plain to those parents who have been forced to watch the mental and physical deterioration of their sons within the mental health system. There are 5 things that lie behind the misconception that people with ASD and Learning Disabilities are more prone to mental illness:-
i) Adult Services do not exist for people with ASD. Current access to services is either through Adult Learning Disability or Mental Health services. Many adults with ASD are directed to Mental Health services, which are geared towards the use of psychotropic drugs.
ii) Psychiatrists do not recognise key autistic behaviours, at least partly because of a lack of training. The diagnosis for ASD is currently a behavioural one and there is little or no training of psychiatrists of the behavioural, let alone the medical, characteristics of ASD.
iii) People with ASD suffer from the almost total absence of services that are designed to meet their special needs, even to the extent of being subject to abusive practices, and they will exhibit, quite naturally, signs of distress that are then diagnosed as mental illness.
iv) There are medical illnesses that can present as mental illness, the most well-known of which is porphyria (as per `The Madness of King George`). People with ASD are known to possess immunological and metabolic disorders, some of which can result in behaviours that are misdiagnosed as mental illness.
v) It is known that, within the population as a whole, about 10% are unable to metabolise psychotropic drugs. Given the immunological and metabolic disorders experienced by people with ASD, it is clear that there is a much greater danger to people with ASD from psychotropic drugs. The associations between violence and self-harm and some anti-depressants are recognised, albeit not widely publicised. So, even the prescribing of these group of drugs to people with ASD is potentially dangerous, as it can be the beginning of a treadmill of psychotropic intervention.

7. No Mandatory Fatal Accident Inquiries (FAIs) for Mental Health Patients, unlike in the prisons (see excerpt below from article in Scottish Review). This is one of a number of general failings in the Mental Health Act and its implementation. Another is the paucity of appropriately qualified or experienced lawyers working in mental health law. There are currently just 4 legal firms in Scotland who specialise in the this area of law.

 - 2 August 2012
The dead children our 'caring' country would rather forget
Kenneth Roy

`Three years ago Lord Cullen, a High Court judge, conducted a review of FAIs. He looked in particular at the types of cases in which inquiries were mandatory and found, for example, that it was not mandatory to have an FAI into the death of a person sectioned under the Mental Health Act – although it was (and remains) mandatory to hold one in the case of a death in prison or young offenders' institution.

ENABLE, a mental health charity, told Cullen: 'Those individuals who have been deprived of their liberty [under the Mental Health Act] should have the same protection as those detained in prison or police cells'. Cullen agreed: 'In my view it is in the public interest that an FAI should be held into the deaths of those detained by the state, especially those who are most vulnerable'. He was rightly concerned that mental health patients had fewer human rights than prisoners. Nothing was done by the Scottish Government to deal with this flagrant anomaly. It remains the case that families of patients being compulsorily held in mental institutions are not entitled to an inquiry into the
circumstances of their loved one's death, yet families of prisoners are. Where is the logic in this? Where is the justice?`

N.B. `ENABLE` is actually Scotland's main charity for people with Learning Disability.

All of the statistical measures avoid measurement of those with ASD, in spite of the recommendation in the 2001 PHIS National Needs Assessment report for Autistic Spectrum Disorders that these were necessary, in order to draw up budgets for service provision. (PHIS = Public Heatlh Institute for Scotland, which has since been merged with another organisation to form NHS Health Scotland)

The new Mental Health Strategy blithely states that 1% of the Scottish population is on the autistic spectrum, in spite of the fact that none of the statistics back this up – apart from those for children. The School Pupil Census gives 7,801 pupils with ASD (out of a school population of 670,511).
The ESAY guesstimates for the numbers of adults give a figure of just under 3,000.
and, as their figures are drawn from local authorities, ESAY have themselves suggested a reason for why these are not reliable figures:-
So where are the other 40,000 people with ASD?

From re-diagnosis of people within one health board area's mental health patients, we can scale this up to guess that there might be in the region of 3,000 people passing through the mental health system each year in Scotland who should be diagnosed with ASD (total numbers passing through the mental health system are in the region of 15,000 people). If there aren't that number of people with ASD in the mental health system, then that raises several questions:-

1) Are they in there, but have principal diagnoses of mental illness or Learning Disability (in which case, they are receiving care that is inappropriate to their needs)?
2) Given the average 10 year drop in life expectancy, they have been killed off by drugs - especially by the use of polypharmacy.
3) There really has been a ten-fold increase in the numbers of children with ASD, which should require urgent investigation. The best international statistics reckon that there has been a 7 fold increase, taking into account widening of diagnostic criteria and improvements in diagnosis.
4) The proportion of very highly functioning adults with ASD is very much higher than amongst children with ASD.

Of course, apart from the last one (which is somewhat tongue in cheek), these are not mutually exclusive

Fiona Sinclair
Autism Rights

One parent summed up our feelings about `the system` - "It just seems to me that, over the years, we have spent more and more money employing more and more people to stop our children getting the things they need."