Autistic people should not be included in Mental Health Act

Monday, 10 October 2011 21:02
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by a Newsnet reporter

On World Mental Health Day, and at the start of Scottish Mental Health Week, a leading organisation,  Autism Rights, campaigning for the rights of people with Autistic Spectrum Disorders (ASD) Rights is calling for revision and amendment of the Mental Health Act to take people with learning disabilities and Autistic Spectrum Disorders out of this Act.  At the moment, people with learning disabilities are specifically included in this Act under the the definition of `mental disorder`.  People with autism are also included in this definition.

Health professionals agree that a learning disability is quite different from a mental illness.  People with learning difficulties are not mentally ill.  Services targetted at people with mental illness are not always appropriate for people with learning disabilities.  However autism and related disorders, nowadays called Autistic Spectrum Disorders, have historically been lumped in together with mental illness, a relic of older medical science which - incorrectly - classed autism as "childhood schizophrenia".  It is now understood that autism is quite distinct from this mental ilness.

Both the Millan Committee of 2001, which was set up by the first Scottish Executive to review the then Mental Health Act, and the 2009 McManus Review of the current Mental Health Act, recommended that people with learning disabilities be taken out of the Mental Health Act.  In spite of the agreement by the Scottish Parliament's Equal Opportunities Committee that this measure was long overdue, nothing has happened.  There is currently a Scottish Government consultation on a Review of Mental Health Strategy which makes no mention of this recommendation.

Autism Rights is now taking a lead in calling for the end to this historical anomaly.  Its Convener Fiona Sinclair said: "The experience of families of adults with autism is that this discriminatory law directly impacts upon the services that they might receive.  While local authorities and health services can continue to avoid the provision of appropriate services, because of an absence of standards, they can always blame the person with the disability when they are no longer able to cope with this, knowing that they have the power to incarcerate that person or enforce medication under the Mental Health Act."

A Frontline Scotland BBC TV programme was made about the issue of incarceration of autistic adults within mental hospitals.  Fife Health Board took out an interdict to prevent its screening.  One of the autistic adults in this programme has been held for more than 11 years in a mental institution in Fife.  The programme has never been screened.

A number of years ago, several parents met with Frank McAveety, then Depute Minister for Health, to give evidence of the abuse of their adult children within the mental health system.  Nothing has been done since that time to investigate the extent of this problem, or to remedy the absence of autism specific training within the mental health system, which frequently leads to misdiagnosis and wholly inappropriate treatment, with a complete absence of therapeutic input.

Mrs Sincliar added: "We know that other organisations have previously called for this discrimination to end, as we have ourselves.  We will be contacting these and other organisations to ask for their support.  The current consultation on a Mental Health Strategy offers a golden opportunity, which will not arise again in the near future, to ask the Scottish Government to put in place the necessary amendments to the Mental Health Act.

"With the implementation of legislation such as the Adults with Incapacity Act, there is no legal or practical need to continue to discriminate against people with disabilities."

Autism Rights was established to research, lobby and campaign for the human rights of people with Autistic Spectrum Disorders (ASD) in Scotland, in particular to campaign for the provision of appropriate health treatment, education, social welfare and justice.   More information is on their website at www.autismrights.org.uk

 

Comments  

 
# pictishbeastie 2011-10-11 11:53
"People with learning difficulties are not mentally ill." That's a bit of a sweeping statement! People with learning difficulties can have mental health problems and vice versa! ANYONE can suffer from mental health problems and a helluva large percentage of people will at some point in their life! Mental illness is a disability too,it's just that it's often very well hidden by the sufferer!
 
 
# Lini 2011-10-11 13:29
Have to agree with pictishbeastie that it is a sweeping statement to say that people with learning difficulties are not mentally ill. If you said that one should not assume that people with learning disabilities are mentally ill then that would be different.

I have no issue with what Autism Rights are trying to achieve here but I do think the tone of the article is not quite right. It gives the impression that there is something wrong with having a mental illness.
 
 
# pictishbeastie 2011-10-11 15:53
Lini - I agree totally and MJM's reply below just perpetuates these prejudices! How many times have we heard "pull yourself together","just go for a nice walk" etc. etc. If only it were that easy!
 
 
# Mad Jock McMad 2011-10-11 13:34
Aye....but ..... the statistics show that the level of mental illness amongst autism suffers is not any higher than the general population.

Here in lies the big problem of public perception of mental illness in all its forms. Autism appears to be a neural disability where it appears the brain's internal wiring has gone wrong as is Tourettes Syndrome.

Pictish try this analogy if:

Autism is equivalent of having your leg cut off (that is irreversibly disabling).

Acute mental illness would be a deep vein thrombosis in a leg in which any disablement is reversible in all but very severe cases but may leave some of the more severe cases with a nasty limp.

Chronic mental illness would be the nasty limp that may or may not improve with time and medication.

Currently there is a one in three chance that any individual will suffer from an acute mental illness where as amongst children autism runs at 1:150 of live births for all forms in the Autism Spectrum Disorder.

They both effect the brain but they are not both 'mental illnesses'
 
 
# pictishbeastie 2011-10-11 15:50
MJM- It is incredibly naive and somewhat insulting of you to say that "Acute mental illness would be a deep vein thrombosis in a leg in which any disablement is reversible in all but very severe cases but may leave some of the more severe cases with a nasty limp". Are you seriously equating serious mental illnesses with having a bad limp? I haven't yet heard of a reversible suicide,have you?
 
 
# Mad Jock McMad 2011-10-11 16:53
I suffer from PTSD Pictish - I know what I am talking about. I have lived with the impact of chronic depression for the last 25+ years interspersed with acute phases some just days (like this weekend) and some over nine months like my last serious breakdown in November 2009 which I am still not officially medically discharged from.

People die from deep venous thrombosis Pictish just like people die from acute mental illness and in about the same proportions, that is why I used it.

The point you miss in your umbrage is that Autism, Tourettes and other like conditions are due to genetic disposition in the main with the possible impact of some external factors such as a specific virus exposure triggering a damaging auto-immune response. Current research indicates H1N1 flu and Measles viruses are the major culprits. There is no equivalent evidence to demonstrate any role for immunisation as a potential cause.

Autism and mental illness are as different from each other as chalk and cheese.
 
 
# Lini 2011-10-11 17:38
Quoting Mad Jock McMad:
Aye....but ..... the statistics show that the level of mental illness amongst autism suffers is not any higher than the general population.


I wouldn't disagree with that but the article says that people with learning disabilities are not mentally ill. That is not accurate as some people with learning disabilities do also suffer with mental health problems at times and that includes people with autism. What is it they say, 1 in 4 of the general population will suffer a mental health condition at some point in their life therefore the same could be said for people with autism. It is the tone in which the article is written in parts that I object to, not that that they are stating there should be a distinction between learning disabilities in terms of the Mental Health Act. To me, it comes across as if having a mental health problem is something to be embarrassed about and something you would not want to be associated with, even if that is not the author's intention.

I have a friend with an adult daughter who has autism so I understand how tough it can be to get the right sort of care for her. She is scared to report difficulties at times for fear that her daughter is taken away. Sometimes she has knocked out my friend, locked her in a cupboard etc so anything to take away this fear and hopefully get some practical help would be most welcome.
 
 
# Mad Jock McMad 2011-10-11 18:11
I hear you and I empathise especially for parents whose young people are at the extreme side of the autism graph.

The problem with severe conditions whether it is Autism or Schizophrenia is medicine still has a pretty Neanderthal approach to both which is as near to 'institutionalis e them and throw away the key' as it ever was.

They no longer talk about 'asylums' but 'controlled environments' while 'locked wards' are now 'secure areas' and 'padded cells' are 'safe rooms' but Sodium Pentothal is still Sodium Pentothal.

Your friend is this lass' mother. Would you want to be in the situation that all that was left to you was to institutionalis e your daughter?

I am trying to imagine how traumatised your friend is within herself. The potential sense of guilt for bringing the lass into the world, the love she has poured into her over the years always with that shred of hope that maybe this year something could be 'done' to help her daughter.

Yet now all that is left is to face defeat, to send her daughter away, the very thing she has fought so long not to do and the inherent guilt that would be there for any loving parent for their child - What more could I have done to have stopped this from happening?

I suggest your friend is now as damaged, in her own way, as her daughter but in your friend it will be mental illness. Maybe for your friend, her real friends need to help her let go of her guilt and her daughter before it destroys her, most likely through breast or some other form of cancer.
 
 
# hindmost 2011-10-11 19:49
I'd say it would probably be more likely that she would benefit from appropriate respite care and support with managing challenging behaviour, services which are made more difficult to access under the current setup. Regarding sodium pentothal that's used in psychiatry to desensitize people with phobias, not likely to be of much use here.
 
 
# Lini 2011-10-12 08:18
MJM - You are right my friend does suffer from mental health problems and we all try to be there to support her. She has looked at all sorts of care for her daughter as she is aware that there will be a time when she may be unable to look after her. However, life is never that simple. At one point her daughter was going to move into her own accommodation with carers to support her. However, now with various cutbacks, the charity that was providing the service,could not guarantee that there would always be someone there. The flat was not in the best of areas and her daughter would not have been able to cope on her own if there was any trouble.

hindmost - you are right, respite is the key but as everyone knows, it is not always easy to get. She is lucky that she has friends and an extended family that help her and try to give her a break but not everyone has this support.
 
 
# Mad Jock McMad 2011-10-12 16:20
Hindmost: I used Sodium Pentothal as a literary device rather than a prescription drug. ;-)
 
 
# Janette Robb 2011-10-11 16:11
I totally agree that people with learning disabilities and Autism Spectrum Disorders should not be included in this act – unless of course, as some do, they develop a co-morbid mental illness. The important point here is, that at present, these people are being AUTOMATICALLY included, whether they have a mental illness or not. This is very wrong.

Real difficulties can emerge when people in these groups do, for whatever reason, become mentally ill, as often they are unable to explain how they feel. They are then at the mercy of the professionals who have limited awareness of the conditions.

I can’t speak for people with learning difficulties but have been made very aware of the problems arising from psychiatric treatment of those with Autism Spectrum Disorders. For them, medication side effects can be very different, very severe and sometimes downright dangerous, compared to those suffered by non-autistic patients. For years this has been leading to drug-induced mental illness, misdiagnosis and untold suffering for the patients and their families.

To quote Paul Shattock, now president of the World Autism Organisation –

“ There is no doubt this had been going on for a long time and there may well be some individuals who have been misdiagnosed and treated inappropriately for up to 30 years. These patients are given medication appropriate for schizophrenia, which makes them worse, and they are given more and more medication as a result.”
[Scotland On Sunday 2002]

If psychiatry is to have responsibility for these people then it has to be made aware of the pitfalls and difficulties of diagnosing and medicating them.

Thank you to Fiona Sinclair of Autism Rights for highlighting this anomaly. Time for change.
 
 
# hindmost 2011-10-11 19:36
That people with autistic spectrum disorders and learning difficulties can also suffer from mental illness is indisputable.

The problem the article is attempting to highlight is that under the current mental health act all provisions for people affected by autism and learning difficulties are subsumed under the mental health act and that this adversely affects the services available to people who are affected by autism and learning difficulties but do not suffer from a mental illness. There is also a growing movement within the autistic community which finds that classifying what they see as a fundamental aspect of who they are as an illness in need of a cure as a rejection of their person.

Autistic supporters of neurodiversity want their way of life to be considered as a respectable, autonomous, and equal way of living. Since autism is inseparable from daily perceptions and decisions, some believe it ought not be separated from the person and treated as a curable disease. Rather, autism should be recognized as a different but equal way of understanding and approaching the world.


en.wikipedia.org/.../...

An example of an individual who has made great achievements as a result of her different view of the world is Dr Temple Grandin PhD.

en.wikipedia.org/.../...

www.templegrandin.com/

The current system of providing services to all three groups within the framework of mental health is that it adversely affects services for all three.

Respite care is probably the easiest example to give. A respite placement suitable for someone with a mental illness will have people employed who's skills and training equip them to provide this service. They would not necessarily possess the completely different skill set required to safely and effectively care for someone with learning difficulties. The provision and availability of respite care is guided by the mental health act however as the needs of these different groups are not identified within the act people with autistic spectrum disorders and learning difficulties are more likely than people with mental illness to be placed inappropriately . Separating service provision for the three groups would lead to an improvement in access to services and the quality of those services to all three as the appropriate skills would be available at each placement.

The provisions within the mental health act for compulsory treatment are not appropriate for use with someone who doesn't have a mental health problem. They exist to provide for situations where someone with capacity to consent withholds that consent and is a danger to themselves and others as a result of a mental illness. Which is by definition a treatable illness and the reason for the suspension of their right to withhold consent is that the treatment provided is directly related to improving or ameliorating their mental illness.

The use of the provisions for compulsory treatment for people with autistic spectrum disorders or learning difficulties is questionable because any treatment currently available will not alter their autism or learning difficulties. As I alluded to earlier their is a movement within the autistic community which would reject such treatment if offered. The appropriate test regarding the withholding of consent for these groups would be one of capacity to give or withhold consent for a treatment, whatever that treatment may be, say a blood transfusion. If you are a jehovas witness then you would refuse consent and would not receive the treatment. If you have learning difficulties or autism then a judgement would be made about your capacity to consent and if deemed to have capacity then your refusal would be accepted. If you are deemed not to have the capacity then the treatment may be given as a result. If you are a jehovas witness and lack capacity I think the discussion would go on for a while. The point is that the reasons for using adults with incapacity are very different from the reasons for using the mental health act.

The separation of provision of services is not about mental health problems being something to be ashamed of it's about ensuring that all three groups receive access to appropriate services. That there is a need for this is illustrated in the post above by Lini.

One of the questions raised following the death of the lady in Elsie Ingles was why was somone with learning difficulties placed in a nursing home for the frail elderly.


Finally ;-)

I agree the article doesn't make its point very clearly.
 
 
# Autism Rights 2011-10-13 01:16
I beg to differ with some of the comments above - I think that the article is perfectly clear.

Treatment under the Mental Health Act is based on psychiatric assessment, regardless of the knowledge that that psychiatrist has of the autistic spectrum. It is not a matter of capacity - treatment can be enforced, regardless of your capacity. Autism in this country is a purely behavioural diagnosis as, of course, are diagnoses of mental illness.

bbc.co.uk/.../... -  transcript of
the "You and Yours" programme on Autism Misdiagnosis, broadcast by BBC Radio
4 on 28 October 2004.

Would that people with autism who are detained for `treatment` (invariably drugs) under the Mental Health Act had the luxury of worrying about `stigma` - their main concern is the serious damage to their health because of the effects of the drugs that they are forced to take.

It is because of the absence of appropriate services that people with Autistic Spectrum Disorders (ASD) can end up in the mental health system - their `challenging behaviour` is a natural reaction to the often ignorant treatment they receive within public services. Also, whilst services for people with Learning Disabilities are now well established, these are not suitable for people with ASD, but are often the only services available. In fact, the only alternative to LD services are those of mental health.

As regards mental health in general, there are good arguments and research supporting a shift away from the routine use of drugs. Take a look at these links:-

psychminded.co.uk/.../...

 news.bbc.co.uk/.../7170167.stm  -Friday, 4 January 2008,  
 Learning disability drug warning
     
  `Doctors are being warned not to routinely give people with learning
disabilities anti-psychotic drugs to curb aggressive behaviour.
 An Imperial College London study of 86 patients found the drugs were no more
effective than being given none at all.
 Researchers said it was more important to address the underlying causes.
 In the UK, 200,000 people with learning disabilities are given anti-psychotic
drugs - even though there is a risk of side-effects, the Lancet reported.  
 These can include risk of weight gain, impotence and strain to the
cardiovascular system.`

Actually, whilst the mental health establishment cites `lifestyle` factors for the much reduced average lifespan of mental health patients, the fact is that their lives are shortened by an average of 10 years, because of the known effects of these drugs when taken long-term. Some of the drugs that are approved for children with autism in this country are obliged to carry warning labels of adverse cardiac events - heart attacks to you and me.

ageofautism.com/.../...
 - parents have no power to stop inappropriate or even illegal drugging of their adult children, which sometimes has tragic consequences, as in the case of Harry Horne-Roberts.

There is now a lot of research evidence to show that people with ASD are particularly vulnerable to the effects of antipsychotic and other psychotropic (psychiatric) drugs, because of their impaired ability to metabolise these drugs and because of their immunological problems.
 

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