Asperger syndrome is not is an illness, it is a life-long condition. Although the cause of the syndrome has yet to be positively identified, research to date indicates that it is related to a physical dysfunction of the brain that may have more than one cause, including a genetic base.
People diagnosed with the syndrome generally have good language skills and may be of average or high intelligence. However, they demonstrate many of the traits associated with autism, which result in communication problems and, sometimes, ritualistic behaviour.
A vulnerable group of people, their behaviour may be challenging ? especially if routines are interrupted or the individual is faced with unexpected changes, such as a break with familiar environments or people. People with the condition can be quirky at best and, at worst, threatening to those who are not familiar with their behaviour.
As a result many adults and adolescents with the syndrome ? under stress and perhaps presenting strange or challenging behaviour ? find themselves in contact with mental health services, especially in-patient treatment.
All too frequently around the country, we find that those in this group are being treated in a way that would not be tolerated in any other part of health care. It is common for people with Asperger to be misdiagnosed as schizophrenic and given medication on that basis. Many of these cases result in long hospital stays, with all the damage of long-term neuroleptic drugs, the effect of which needs to be addressed.
Most of the damage done to in-patients will occur in the first four to six weeks, through a combination of inappropriate medication, finding themselves in an environment that exacerbates their difficulties in managing their behaviour, and through carers and parents being resisted by professionals and given the minimum amount of access. That cannot be tolerated.
The government must introduce the following measures as a matter of urgency.
First, unless a psychiatrist has received an accredited training course and has a recognised working knowledge of the treatment of Asperger syndrome and autism, a second opinion on the treatment and management of that individual patient must be sought from another professional who has that expertise as an input to the case.
Secondly, the Department of Health should set up an immediate investigation into the number of adolescents and adults with an Asperger syndrome diagnosis who have also been treated for schizophrenia, as we should know how many of these people are being misdiagnosed and mismedicated. When an undiagnosed adult is suspected of having Asperger syndrome, a referral must be made to a professional who has experience of autism. Diagnosis of adults cannot be learned from a textbook. It takes years of work. It is much more complex than the diagnosis of children, and there are people who have reached their 20s, 30s, 40s and even 50s before being diagnosed, as other factors must be looked for. That requires a huge level of expertise.
Thirdly all primary care trusts must be required to identify their autism and Asperger professionals for in-patient care and community care ? from community psychiatric nurse level to consultants in hospitals ? and to implement a structured training and accreditation programme. They should also draw up a referral list, even if it is out of area, so that those people who do not have the expertise know of a professional on whom they can call for case-by-case referral.
If I need an operation for a broken leg, I would expect an orthopaedic surgeon to deal with it. If I were admitted to hospital with an existing heart condition, I would not expect to be medicated for some other condition. It seems that psychiatrists are laws unto themselves. There is an ignorance and an arrogance that permeates their approach to Asperger syndrome that is all too common.
I have many files of heart-rending casework, demonstrating the heartbreak for the individual and their carers when they come up against a system that treats them in this way. It is leading to family breakdown, where increasingly ageing parents and carers bear the strain of lack of provision, of failure to diagnose or even a failure to recognise diagnosis on the part of other professionals. In some cases, this has led to permanent damage caused by inappropriate medication.
In the advice to carers, many of us who are involved in dealing with individual casework, including MPs, are not prepared to accept the status quo. It is becoming more common for cases to be tested in the courts. I believe that many more cases will be so tested if the situation is allowed to continue. It is criminal.
I can think of no other area of health care where this situation would be permitted. These patients are the least able to self-advocate, yet the people who could advocate for them ? their immediate carers ? are sidelined. It is cruel and it is unjust, and it must stop.