It is sometimes disappointing how the level of understanding of Autism, even among supposed experts, is so very low.
As readers of this blog are aware there is already a vast wealth of research in autism, highlighting many biological differences and comorbid medical conditions. Not surprisingly this is reflected in life expectancy.
Autistica, a UK Autism charity, is trying to raise $15 million to fund five years of research into why there is premature death in autism.
This would be a complete waste of money, since the answers already exist in the literature if this “Autism Research” charity employed people who actually could/did read the research.
This subject dates back to a Swedish study from last year that is languishing behind a pay wall, so no open access to it.
The rather skimpy abstract:
The rather skimpy abstract:
The rather underwhelming press release from the Karolinska Institute:-
Courtesy of SFARI we have this graphic and highlights.
· Autistic adults with a learning disability were found to die more than 30 years before non-autistic people.
· The study found that on average people with autism died over 18 years earlier than non-autistic people.
· Autistic adults with a learning disability are 40 times more likely to die prematurely due to a neurological condition, with epilepsy the leading cause of death
· Autistic adults without a learning disability are 9 times more likely to die from suicide
Autistica did produce a report that is based on the Swedish study:-
Personal tragedies, public crisis - The urgent need for a national response to early death in autism
Is there anything new here?
Epilepsy
People might rather not discuss it, but there are numerous examples of well-known people who had a child with severe autism, MR/ID and epilepsy, and it all ended pretty much as suggested in the Swedish Study. A fatal seizure (SUDEP), or an accident like drowning following a seizure.
The logical thing to do is to prevent epilepsy developing in the first place, which some readers of this blog are already endeavoring to do. This is not fantasy, just hard to prove it worked.
Suicide
We have seen that anxiety can be a key problem for people with Asperger’s.
We heard from a UK pediatrician who found an off-label treatment, Baclofen, which was effective in most cases. We also were told why he/she did not want to continue prescribing it do to the lack of any clinical trials supporting its use.
We saw how Prozac, the anti-anxiety pill frequently prescribed in autism has the known side effect of increasing suicidal thoughts.
We saw a long time ago in my hypothesis on TRH, that the US military is developing a TRH nasal spray to reduce the suicide rate in soldiers returning from combat. A homemade version of this nasal spray was used for years by a US doctor/author to treat various neurological disorders.
We do not need to worry about suicide and people with Strict Definition Autism (SDA), but they are highly prone to accidents like drowning, caused by a combination of being allowed to wander off unsupervised and not knowing how to swim confidently.
Medical Comorbidities
Autism has a long list of known medical comorbidities and not surprisingly they will show up as a cause of death.
By accurately treating a person’s autism, you will at the same time be treating some of their comorbid conditions.
For example, if you have a problem with calcium channels (like Cav1.2) in your brain, you should not be surprised to have problems in other parts of the body where they are heavily expressed, so the heart and pancreas for Cav1.2.
The medical comorbidities are indeed a valuable tool to identify the possible biological dysfunctions underlying a person’s autism. Then you can treat them at the same time, with the same drug.
Bipolar and Schizophrenia
In the case of autism’s adult-onset big brothers, namely bipolar and schizophrenia, there is a reduction in life expectancy of 10-20 years.
By comparison, type 1 diabetes on average reduces life expectancy by 20 years. But you do not have to be Mr/Ms Average; if you control your condition well and also improve insulin sensitivity (ALA, NAC, Cinnamon, Sulforaphane, Cocoa flavanols etc.) the future can be bright.
People with Bipolar or Schizophrenia have a high suicide risk, in common with Asperger’s, but they also have high levels of substance abuse, starting with smoking and alcohol and going up the scale.
The core biological dysfunctions in both Bipolar and Schizophrenia are studied and some evidence-based therapies exist, lying forgotten in the literature.
Sweden as a Model
The autism mortality statistics in this post are based on Swedish data. Sweden is not typical. Sweden is possibly the best country in the world to live in if you have a physical or mental disability. It is remarkable inclusive and the less able are well looked after. So if the data existed for other countries, it would very likely look even worse.
Sweden as a Model
The autism mortality statistics in this post are based on Swedish data. Sweden is not typical. Sweden is possibly the best country in the world to live in if you have a physical or mental disability. It is remarkable inclusive and the less able are well looked after. So if the data existed for other countries, it would very likely look even worse.
Conclusion
I think quasi-science organizations, like Autistica, are not helping and just add to the public misunderstanding of autism. It is highly complex, but a great deal is already understood.
Better use should be made of what is already known. It cannot be adequately explained in tabloid TV, or a few sound bites.
Better use should be made of what is already known. It cannot be adequately explained in tabloid TV, or a few sound bites.
Why don’t researchers/Institutes like the Karolinska Institute, Stockholm, pay up a couple of thousand dollars and make their excellent research open access?
As we saw when we looked at Down Syndrome, life expectancy is a case of out of sight is out of mind.
What do Autistica think the age at death of someone with autism+MR/ID +epilepsy was in 1960?
In the Down Syndrome chart above, you just had to stop locking them up in institutions as babies, for them to have a better prognosis.
Since the 1970s, society no longer locks up toddlers with autism either, so now they live longer. To live as long as other people, they need some help from science.
If you treat the underlying dysfunctions in people with autism, bingo they will live longer. You do not need $15 million to figure that out. You do need an open mind.
Studies like these are likely from the compassionate crowd which more or less takes the view that autism is too hard a nut to crack so lets throw in the towel and make the lives of autistic individuals and their families as pleasant as possible.
ReplyDeleteOn the other hand, if the research money is going to look at genes that intersect with the aging process in an autistic individual, then it might not be poorly spent money because I believe many neurodegenerative diseases associated with aging have a very common pathology with autism, and that is a potential research goldmine with respect to coming up with useful therapies for those with autism. I have read probably about as many papers on the aging process and the diseases associated with it (especially those that affect the brain) as I have on autism (and I try and read everything on autism I can) and if I were a billionaire I would fund research that goes into the nexus of understanding autism, aging, cancer, and neurodegenerative disease in general.
Of course, for those of us with children growing up fast who have already missed many so-called developmental milestones, other interventions will be necessary for us parents to have some peace of mind in knowing that their child has a good shot at life, because the long-term statistics no matter how you dice or slice them look extremely grim and depressing.
I have a long-term plan that is I feel is going much better than I ever hoped at the moment on undoing the neurological abnormalities in people who have missed those "milestones", and 15 million dollars and could really help speed things along in terms of getting access and the technical expertise (fMRI, MEG, EEG, etc.) I need to take this all to the level as a fundamentally useful neurological therapy.
Amen Peter, this is so well said.
ReplyDeleteThese large charities like Autistica and NAS now find themselves in very tricky situation, where they have their backs against the wall with these findings, which are nothing new but are this time too large to ignore. They now at the same time have to lobby and speak for reducing the mortality and disease rates in autism, i.e. all things biomedical, but are on the other hand – seeing as they are run by and speak for only the very high functioning Asperger's section of autism spectrum - desperate to cling to the fairy tales of autism not being biomedical but 'just a different way of viewing the word' (cue all the neurotribes balloney).
My guess is that they will raise and waste £15mil on bad research that will ignore everything we already know, and come up with yet more fairy stories such as high rates of biomedical abnormalities in autism stemming from “the stress of social pressure to be like others” or “people with autism avoiding doctor’s offices” (both arguments have been put forward already btw).
Roger, I think they are talking about the severe type of mental retardation. The lady who founded the Autistica charity had a son who died in his 30s. He had severe autism + mental retardation + epilepsy. He fits the group that tend not to get to their 40s.
ReplyDeleteChannelopathies are very common in autism and they also contribute to heart disease and epilepsy. So it is not surprising some people have 2, or all 3 conditions.
Since 99+% of doctors think autism is untreatable the situation is not going to change any time soon. For most people, even if you want help, there is nobody.
If you had lived in the UK, you would never have had your folate deficiency diagnosed and treated. You would have been forgotten about. You were lucky.
Hi, I agree this does seem like a waste of time, almost as bad as hearing about another study on the nuances of symptoms of autism, further defining autism, or best SLP techniques for children with autism. At this point, studies like these do not seem to help individuals with autism, only the researchers themselves, maybe. At this point, we need more studies on the actual causes of autism, as politically sensitive as those studies may be.
ReplyDelete