As we have seen at various points in this blog, there is mounting evidence to support the use of steroids in autism, particularly in regressive autism.
Since long-term steroid use has side effects, there have been no large long-term trials. There is plenty of anecdotal evidence, particularly from the US. We saw a paper on Immunomodulatory Therapy, by Michael Chez, which discussed the benefits of Prednisone, a very cheap oral steroid.
In the days before inhalers for asthma, it was low dose oral prednisone that kept many sufferers from an early death. It did result in reduced height, but this is probably a price worth paying to stay alive.
A paper was recently published by specialists at Harvard Medical School on the subject of steroids and regressive autism.
Corticosteroid therapy in regressive autism: a retrospective study ofeffects on the Frequency Modulated Auditory Evoked Response (FMAER), language,and behavior
It pretty much concludes the same as Chez and others have been saying for many years; corticosteroids can have a profound effect on some types of autism. It remains unlikely that there will ever be large scale trials, due to the scaremongering about side effects. Much is known about how to minimize the side effects of steroids, for example tapering and pulse dosing.
Here are some key points from the paper:-
· Up to a third of children with Autism Spectrum Disorder (ASD) manifest regressive autism (R-ASD).They show normal early development followed by loss of language and social skills. Absent evidence-based therapies, anecdotal evidence suggests improvement following use of corticosteroids
· Twenty steroid-treated R-ASD (STAR) and 24 not-treated ASD patients (NSA), aged 3 - 5 years, were retrospectively identified from a large database.
· Star group subjects’ language ratings were significantly improved and more STAR than NSA group subjects showed significant language improvement. Most STAR group children showed significant behavioral improvement after treatment. STAR group language and behavior improvement was retained one year after treatment. Groups did not differ in terms of minor EEG abnormalities. Steroid treatment produced no lasting morbidity
· Steroid treatment was associated with a significantly increased FMAER response magnitude, reduction of FMAER response distortion, and improvement in language and behavior scores. This was not observed in the non-treated group. These pilot findings warrant a prospective randomized validation trial of steroid treatment for R-ASD utilizing FMAER, EEG, and standardized ASD, language and behavior measures, and a longer follow-up period.
· Referring physicians often enquire about the utility of adrenal corticosteroids or glucocorticoids to treat patients with R-ASD
Prednisone is already a treatment used in PANS, PANDAS and Landau-kleffner syndrome, which all have autism-like symptoms.
Corticosteroids for the treatment of Landau-kleffner syndrome and continuous spike-wave discharge during sleep.
Slightly off-topic but, the following is relevant.
There was a recent documentary by the BBC about US-style DAN autism therapies now being sold to parents in the United Kingdom. The UK has a government funded institute (NICE) that publishes lengthy advice to doctors as to what drugs to prescribe for almost all conditions, including autism. UK doctors will get into trouble if they do not follow NICE guidelines.
Commenting for the BBC, on the DAN-type treatments, Francesca Happe, a professor of cognitive neuroscience at King's College London and apparently one of the world's leading researchers into autism, said practitioners who "peddled" treatments without proof were "wicked".
But how much proof do you need? And who is to say which published researcher is serious and which is a charlatan. The lay autism parent might (falsely) assume that if a researcher is publishing papers, they must be serious and the conclusions reliable. The reality is that some of the papers are indeed flawed and the conclusions are nonsense. That is why I keep a list of the researchers who I believe in.
At the extreme are bodies like the UK’s NICE, who conclude that absolutely none of the hundreds/thousands of drugs/supplements proposed for treating core-autism should be used.
The short version of the NICE clinical guidelines is below. The much longer version reviews in detail many of the papers I have reviewed in this blog, but comes to a very different conclusion.
I read the same papers as NICE and concluded something entirely different. I found several drugs that do indeed work. The difference is that my standard of proof is lower than that of NICE and professor of cognitive neuroscience at King's College London.
The DAN/TACA/MAPS/ARI doctors from the US are also hopefully read all these papers, but they come up with ideas of the sort that do fall into the “wicked “category mentioned above.
Autism parents are not surprising bewildered. It is the parent that ends up deciding where to draw the line between what treatment is genuine and what is fantasy, perhaps like this one.
Yet again, we have a therapy based on solid science that is in use by a very small number of serious mainstream doctors. It has not crossed into general use due to a lack of large scale trials.
As a result, medical science continues to tell families that there are no drug therapies for core autism, except some anti-psychotics, anti-depressants and anticonvulsants most of which have serious side-effects and/or cause dependence.
In the case of prednisone, this is a cheap generic drug that does have side effect with prolonged use. Severe regressive autism can also have side-effects, like complete loss of speech and cognitive impairment.
The answer might be parents signing a waiver to get open access to drugs that have been used successfully in experimental use for autism, without the doctor worrying about losing his license, or being blamed for any side effects.