The differing worlds of autism and Alzheimer’s
Perspectives
Sometimes we need to step back from autism and consider it in relation to other disorders in order to refresh our sense of perspective. Take Alzheimer’s Disease. It is the most common form of dementia. The Alzheimer’s Society estimates that out of 700,000 dementia sufferers in the UK over 400,000 have Alzheimer’s. In terms of numbers it is comparable to autism.
Autism is spread across the whole age range, affecting maybe 1 per cent of the entire population. Alzheimer’s mainly affects the elderly. According to the Alzheimer’s Society if you are 65 or older you have a one in fourteen chance of developing Alzheimer’s. That rises to one in six at 80. and if you are lucky enough to survive into your nineties you have a one in three chance of developing some form of dementia.
Alzheimer’s is progressive. If you have it you are going to get worse and it is probably going to shorten your life. Autism generally improves with age. You learn to live with your difficulties and acquire strategies for coping. If you are one of the majority who score in the normal to above average range in IQ tests you will probably manage to cope very well. Even those who are severely impaired can expect to lead long and happy lives if their needs are met.
I am not trying to diminish the problems that autism can create. I do believe that there is a doom laden perspective which the media typically take when reporting on autism. This perspective derives in no small part from the antics of those autism advocates who believe that various combinations of unorthodox biomedical therapies and intensive behavioural interventions offer the best hope, indeed the only hope for autistic children. This perspective can be summarized as follows
- The growth in autism is creating a public health crisis.
- Left untreated, It is creating a demographic time bomb with dire financial consequences for society when it has to meet the lifetime care costs of autistic adults.
- Families afflicted with autism not only face personal misery and devastation but also severe financial burdens entailed by therapies that their public or private health care schemes refuse to fund.
- More needs to be spent now on prevention and cure if we are to prevent untold misery being visited upon future generations.
I have disputed all of these statements in the past in relation to autism. But they do seem a much better fit to the reality of Alzheimers.
- With the increase in life expectancy there is a real growth in Alzheimer’s. As I noted earlier, if you live that long you have a seven percent chance of developing AD at 65. and the longer you live after that the greater your chances.
- We are already facing the demographic consequences. In the UK, according to the Alzheimer’s Research Trust the annual care costs for Alzheimer’s in the UK are £11 billion, more than the combined care costs of all victims of stroke, cancer and heart disease.
- These costs do not include the estimated £6 billion in costs and lost earnings borne by families who have to give up work to act as carers to their loved ones. Then there are the drugs that are rationed. NICE has decided that although Aricept is effective it is not effective enough in the early stages of Alzheimer’s to justify prescribing it on the NHS at a cost to the state of £2.50 a day. It is facing a legal challenge based on the precept that their model of cost effectiveness only takes account of NHS spending and ignores the wider social costs being incurred.
- Research into Alzheimer’s is poorly funded. In the UK we spend £11 on research for every patient with Alzheimer’s. For cancer the figure is £289 per patient.
The Triumph of Science
So why does the media coverage of Alzheimer’s seem so much better than their autism coverage? No doubt there are crazy ideas out there about Alzheimer’s, just as there are about autism. But they seem to have less hold on the public imagination. Last week the news media all carried a story about a new drug treatment for Alzheimer’s Disease. Most of the coverage was in measured terms unlike the hyperbole that usually greets any study that hints at a new miracle cure or treatment for autism. The press was right to be cautious. As The Economist pointed out:
THE past few months have not been good for Alzheimer’s research. Trials of two drugs and one vaccine have flopped. This was the dour background to the International Conference on Alzheimer’s Disease, held in Chicago this week.
Steve Novella, over at Neurologica, has written an excellent commentary on the background to the research by Professor Wischik of Aberdeen University that has led to this potential breakthrough. Steve examines the two most promising theories of Alzheimers:
The primary pathological findings in AD are neurofibrillary tangles and plaques. Tangles are, as the name implies, tangle of tau protein. Plaques are more sheet-like in form and are comprised of another protein, beta-amyloid.
The new treatment, a drug, methylthioninium chloride, patented as Rember, offers real hope of not only addressing the symptoms, which is what existing drugs do, but also actually influencing the course of the disease and slowing its development. It attacks the tau protein tangles, rather than the amyloid plaques which have resisted previous treatment attempts. And in this Phase II trial it reduced progression by as much as 81%. It will still take years to bring the drug to market. Next will come extensive Phase III testing involving many hundreds, perhaps thousands of sufferers before the drug can be licenced. Meanwhile patients who benefited from the Phase II trials will continue to be given the drug.
There should be no shortage of volunteers to test the drug. according to The Times:
In the first 24 hours after the research results were announced, Wischik received more than 100 e-mails from desperate people living the half-life of the Lovedays all over the world, wanting to join his next trial. One family even offered to move from California.
My heart goes out to these people. My own parents both lived to a good age and died with their mental capacity intact. I hope that bodes well for my own future. But this insistence on following procedure and thoroughly researching any new intervention brings me to my final parallel between autism and Alzheimer’s.
In any discussion about biomedical interventions for autism those of us who defend evidence based medicine are often berated by parents and practitioners who tell us they cannot afford to wait for clinical trials, or even that their new integrative approach cannot be tested empirically. For example, I once wrote about Lorene Amet who argued that it would be unethical to carry out proper research before experimenting on children because,
“the biomedical treatments that some feel have been shown to lead to recoveries are complex, comprised of several inter-dependent parameters, and carried out over a long period of time, usually for a minimum of two years.”
ah, those “Brave Maverick Doctors.” Professor Wischik is something of a brave maverick doctor, himself. Again, from The Times:
Interestingly, the area of research that has produced this new breakthrough was regarded as a backwater in the scientific world. Since Alois Alzheimer, a German neurologist, first described the disease just over 100 years ago, attention has been concentrated on amyloid, a substance that occurs naturally in the brain but overproduces in Alzheimer’s sufferers, creating sticky clusters that turn into plaques which destroy brain cells.
“The little world of Alzheimer’s disease research has been obsessed with the amyloid theory and has been saying for years that tangles – the things Alzheimer discovered – are late stage, you couldn’t access them pharmaceutically, all of which is just false,” Wischik says.
“People would reject our papers. They’d say, ‘Yes, this is all very elegant work but it’s got nothing to do with Alzheimer’s disease, everybody knows that Alzheimer’s disease is caused by amyloid’.”
But Professor Wischik did not follow the brave autism mavericks and abandon mainstream science and medicine to pursue his ends. The story in The Scotsman describes his 24 years of hard work in Alzheimer’s research:
Born in France and brought up in Australia, his association with the disease began when he won a scholarship to Cambridge to work as what he calls a “research slave” under the direction of eminent scientists Sir Martin Roth and Sir Aaron Klug.
It is good to see proper standards of research and the principles of evidence based medicine upheld in the area of Alzheimer’s Disease. It encourages me to hope that similar methods may bear fruit in the field of autism. I can find no better ending for this piece than Steve Novella’s conclusion to his piece on Alzheimer’s. And so I shall repeat it in full.
Science Rules
In conclusion I would like to do a completely shameless metaphorical victory dance for science. Science is our most powerful tool for understanding the world and thereby improving our lives. Mysticism, superstition, magical thinking, and all the nonsense that makes up the bulk of alternative medicine does nothing for humanity. Magic isn’t real, science is. This new research is reductionist, materialist, naturalistic science at work. And thank goodness for it.
