Friday, April 15, 2011

Higher mortality rate of autistics with epilepsy

One of the many tenets of neurodiversity is that autism is not comparable to diseases like cancer because autism does not kill. This has been proven wrong many times in the instances where autistic children died in accidental drownings (for example Ashley Brock) or James Deloroy who got lost and died in a snowstorm or children hit by cars, trains etc. due to their autism. From Autism speaks and the California DDS and a new journal article it would seem that there is evidence of a much higher mortality rate in persons with autism who have the comorbid diagnosis of epilepsy than in autism alone. These data found that the percentage of persons who had autism and epilepsy was higher than previously thought. So this is one reason that neurodiversity is yet again incorrect about autism not killing people and another reason we need to find a cure for autism. In an email I received from autism speaks this was elaborated on even further: It is well established that epilepsy is a major medical disorder that is often co-morbid with autism in as many as 30 percent of children. As many as one in 20 children diagnosed with autism by age 3 could either already have epilepsy or develop epilepsy later in life. As noted by the ATP more than a decade ago, sudden unexplained death in epilepsy (SUDEP) has been identified as a cause of death in individuals with autism. Higher mortality rates than in the general population have been reported among individuals with autism, however, there is relatively little known about the specific risk factors that account for the reported higher-than-expected rate of mortality in autism. “Sudden, unexpected or unexplained death in autism is often, but not always related to epilepsy and we need to use caution when interpreting these data,” explained Autism Speaks Vice President of Clinical Programs Clara Lajonchere, Ph.D. “These findings are important for understanding risk factors that may contribute to early death in individuals with autism and further underscore the need for more accurate and accessible records on cause of death in this population. Furthermore, state surveillance programs should implement better tracking mechanisms to help us better understand mortality for individuals with autism and co-occurring disorders such as epilepsy. Critical initiatives supported by Autism Speaks brain tissue program will help bring these issues to the fore and provide information our community needs to help prevent early death in persons with autism.” Though, this does not affect all persons with autism it is not an insignificant number, so once again neurodiversity can choke on this data while they are saying that nothing is wrong with having autism and that autism is not a life-threatening condition.


Anonymous said...

Did anyone compare the death rates of epileptics who have autism with the death rates of epileptics who don't have autism?

"As many as one in 20 children diagnosed with autism by age 3 could either already have epilepsy or develop epilepsy later in life."

...and what percentage of children who have epilepsy could either already have autism or develop autism later in life?

The answers to those two questions could help one figure out how much of this tragedy is due to the autism and how much is due to the epilepsy.

SM69 said...

Thanks for flagging this report.

I doubt the ATP donation sample is representative of the ASD population at large. The reasons for me saying this is that the 39% seizure rate reported absolutely does not match with our own report and the ones made by a range of practitioners in the US. Also, one would expect parents who experience much more severe issues in autism, parents who have considered death as a strong possibility, as being those enrolling in the programme. Would a parent proud of their Asperger kid want to enroll him/her in this Autism Tissue Prgram? I doubt it.

I am not claiming that our sample is representative either, because of self-referral etc., but in a group of 330 children, there are ONLY 6.1% of them that have experienced seizure. And I am including any seizure, for example 1-2 febrile convulsions only as toddlers, no further seizure in childhood and the child never receiving any anti-epileptic medication. In fact, I can only recollect from memory (not having the data in front of me), 3 children who have chronic seizure and are placed on medication in this large sample group.

Several practitioners have reported the same and it is our view that today autistic children are different to the ones of the 70s and 80s (on which the 30% seizure figure was established). One could argue the spectrum is more widely recognised now, hence including less affected children.

Having said this- a seizure disorder is an absolute life threatening condition- accidents fall etc- drowning- and heart attack. No doubt- it’s obvious and we know it from a number of reports.

As for autism: To us, and to many practitioners who routinely meet families experiencing regressive autism, alongside a range of newly occurring comorbid clinical issues- autism, or what ever these kids have, is a disease- these kids are sick. I am not saying all children are, but many are. They are sick and they get better with treatment.

Those denying this reality are either not even aware of it- or looking at autism from their narrow perspective, unable to conceive an alternative view to a condition that is not yet understood. Arrogance and denial prevail, to put this mildly; what is truly happening is even more cynical than this.

Anonymous said...

Don't you just love it when autistics with epilepsy admit to wanting to cure their epilepsy but not their autism? It's all part of their brain damage! Sheesh!

Autism Mom Rising said...

Thank you for this piece on Autism and Epilepsy. In some cases I think the two are intertwined more than we can even fathom. Boston Children's Hospital, the world's experts on Landau Kleffner Syndrome, say on their website that a variant of this condition might be common in those with Regressive Autism. My son developed Autism at six months old and was later diagnosed with Landau Kleffner Variant after going from HFA at age 4 to severely Autistic by 6. Once the epilepsy was treated he settled into a moderate form of Autism. Had he begun an anti-convulsant med at 6 months, when I first noticing him cutting in and out, would his life be very different today? It is quite possible.

Anonymous said...

There's been a lot of research re autism and epilepsy recently:
* a common autism/epilepsy gene found
* the ATP research: 39% prevalence stat and increased mortality risk
* research showing people with autism plus epilepsy have an increased chance of intractable epilepsy (55% vs 30%), and that this is associated with increased language and developmental delays. (Intractable epilepsy is associated with increased risk of death amongst people with epilepsy, regardless of autism. So increased % of intractable epilepsy logically means increased % of epilepsy deaths).

Re stats, and whether the ATP one is representative: different studies re epilepsy amongst those of us on the autism spectrum have found very different prevalence stats, ranging from 7-odd% to 45%. Most come in at the high end. Those that don't have subject groups largely or entirely made up of people with Aspergers and "high functioning" autism.

@Autism Mom Rising
I had a seizure-related regression at age 8. Written off as psychological and "bizarre behavior". Mind you, docs were calling my autism "psychosis" at the time :/ (I'm 40)

And @JediKnight2?
I'm one of those people with epilepsy and autism who would love to have my seizures controlled, but would miss parts of my autism (others frustrate me, but figure they come attached). Do you have any idea what it's like having many seizures a day, every day? Having life-threatening seizures that can only be stopped by IV medication (google "status epilepticus")? I'm not there now. But I Have Been. For years and years and years :'(

Anonymous said...

"JediKnight2 said...
Don't you just love it when autistics with epilepsy admit to wanting to cure their epilepsy but not their autism? It's all part of their brain damage! Sheesh!"

Hey, why don't you accept their right to body autonomy and shut the fuck up?