Autistic Woman Dies Following Visit to Doctor
April 11, 2007 by Kristina Chew, PhD
Filed under Health
Just ten minutes after 26-year-old Rebecca Burchell returned home from visiting a doctor, she had a fatal fit and died two days later in the intensive care at the Royal Cornwall Hospital in Truro in the UK, on April 3. Rebecca had autism and her parents, Tony and Jackie Burchell, think that she had meningitis; basic checks (for temperature and blood pressure) were not performed by the doctor, according to today’s WestCountry.co.uk. While the official cause of Rebecca’s death is still being determined, her father says that an autopsy determined that she died of epilepsy.
A funeral service and celebration of Rebecca’s life will be held tomorrow; her family plans
to focus on the positive side of Rebecca’s life – such as her sense of humour. This was demonstrated just a few days before her death, when Rebecca playfully collected up a handful of worms and then showed them to her mother – who hates the creatures.
Rebecca’s story made me think of how difficult it can be for my son Charlie to communicate any symptoms or signs of physical distress. What might not have been communicated to the doctor whom she saw; what might the doctor ought to have asked her mother, with her being autistic in mind? More than once I have realized that a difficult afternoon filled with crying, screaming, not wanting to do anything, wrapping himself in his blanket, has meant that he has a stomach ache or is coming down with a cold. Certainly we try to teach Charlie to communicate his needs, but helping him to talk about his feelings and thoughts is far harder; it seems to me more than necessary that all health professionals be trained not only in autism, but in understanding how someone like Charlie—-someone with minimal language or who is non-verbal—-”communicates” physical distress and sickness.
We’re thinking of Rebecca and her family here.
This is always are very scary thought for me as well. Thinking if K.C. had something that made him very sick and had an emergency figuring out what is wrong with him is very hard. I think that you and I have become very good at reading our kiddos even without words. I wish Dr.s had more training in Autism to better help Autistic individuals. My heart goes out to Rebecca and her family.
Physicians have known for a long time that babies could be hard to diagnose, because of their lack of communication. And so the docs usually ask about how active the child is, whether they are feeding normally, etc., to try and get at whether the child is “sick” or not.
It’s a more recent phenomenon for doctors to realize that much the same holds true for the geriatric population, in that they are often not as overtly symptomatic for a given degree of “sickness” (e.g., they may have a burst appendix with a raging peritonitis, but appear outwardly to be relatively stable, and not complain much less about pain than younger patients would).
So now it’s time to educate current docs regarding autistics, who may “look normal” and not be complaining, but be acutely sick. I think relying on parents to give you a sense of whether the person is sick or not is a good start.
This is a scary thing to think about, Landon typically does not display any symptoms until the sickness is well under way….sudden high fever, extreme sleepiness, and my personal favorite, sudden vomiting (heavy on the sarcasm). I am hoping that as he grows older I will be able to pick up on other more subtle signs, for instance right now, I believe he may be getting tired more easily because of seasonal allergies dragging him down, I know how I feel when mine are raging. BUT he is very hard to read…and if you ask him how he feels, it is always “good”.
My heart goes out to this family, I pray they find some comfort somehow and that doctors learn something from this.
So now it’s time to educate current docs regarding autistics, who may “look normal” and not be complaining, but be acutely sick. I think relying on parents to give you a sense of whether the person is sick or not is a good start.
That’s a really good idea.
This is sad, and also scary. I am often scared that something like this will happen with me, because even with all my verbal skills I have had so many near-misses. Often it was someone else who saw me acting different and insisted the doctor be called.
Then, even in the best-case scenario, where I go to the doctor, explain where the pain is, etc… like today. Yesterday I had evil nasty pain making me vomit, which is unusual for me. They treated that in part because they saw me upchucking, in part because the skin above that area was hot. (I’ve never upchucked in response to pain except for migraines before that.) But the day before, I’d gone to the dentist with pain and he’d said he didn’t see anything wrong. And then today, I went to the dentist reporting severe pain but with no change in my facial expression at all from normal. It took a fair bit of convincing before he realized this was serious. And now I’m probably off to have my wisdom teeth out soon (I’ve only got 3 of them luckily).
But, even in that scenario, people often don’t take me seriously because my body language doesn’t show pain the way other people’s does. My friend Laura can tell when I’m in pain or having trouble because I move differently and respond to information differently. But most people can’t pick up those subtleties of movement, and just think that’s normal for me.
So I often have to just put this fear out of my mind, because I don’t know what could be done about it, but I know there have been so many near-misses in my life that one day there could be a full miss and I won’t survive.
And that goes double or triple for people who, unlike me, have no formal communication system. But it’s important to know that even those of us who have great typing or speech can’t necessarily report pain reliably, report the location of pain reliably, and so on and so forth.
This makes me think how I tend to look for signs and symptoms that I might have that indicate sickness, rather than trying to figure out how Charlie might be communicating his discomfort. A child being able to identify his body parts does not (as I’ve realized time and again) mean that he indicate what inside him hurts……
Club166, regarding your mention of geriatric patients. Trying to “read” Charlie has helped a lot in trying to figure out ailments and more that are affecting my in-laws, especially for Jim’s mother.
Unfortunately this is extraordinarily common…even with autistic people who are verbal and insistant. Yesterday my dad and I were in the ER because he was in nonconvulsive status epilepticus. They kept insisting he was rolling his eyes ALL THE WAY BACK because of the meds, clearly I was too uneducated to understand. Uh. No. Last I checked NPs don’t go to med school either, and I’ve survived status 4 times or so and SUDEP (Sudden Unexpected Death in EPilepsy, what Rebecca died of) once. And I was verbal, loud, insistant, and on the phone with the regional supervisor reading names and liscence numbers and descriptions of NCSE out of a neurology textbook I got as a gift.
The education needs to be there, and it needs to be there years ago. But it isn’t GOING to be there so long as the people with money are hell-bent on making us a word for the history books. We need to have a traveling autistic tag team of different phenotypes of autism, medically complicatedish, and intelligent enough to be a royal pain in the neck talk to doctors & med students (at their expense)…because they aren’t learning this out of their books, that’s for sure.
And don’t EVEN get me started on what constitutes a normal temperature. UGH…
I actually learned to fake pain reactions for some types of pain so they’d be noticed and believed, which might seem like a good thing and can be, but it can cause the pain I’m in to be psychologically intensified and that can have me reacting to non-impairing levels of pain in an exaggerated fashion.
“And don’t EVEN get me started on what constitutes a normal temperature. UGH…”
*chuckle*
i foudn this article because my son who is four and has autism (and is totally nonverbal),goes through crying/screaming jags. he seems in terrible pain and we cant pinpoint the source. i always fear he will suddenly die,that is is something extremely serious. i might not feel the same if he could tell me exactly where he hurt and could communicate with me when he doesnt feel well. but i have heard of people with autism dying because of medical problems that no one knew about and it worries me
my thoughts are with her and her family..when they see each other again,she can joke with them again..the way she always did AND verbally and no one or no thing ever,ever part them again..:’(
Hi a comment on above story, the young lady mentioned was a known epileptic and had emergency medication to be administered if she had a siezure. Cause of death would be neglect as the person with her obviously didn’t use emergency procedure…
Maybe we should ask was enough done by her carer to prevent this, did her carer know how to look after this young lady and know the procedure and the severity of not doing things the right way???? were they trained. How guilty would you feel knowing that you could have prevented this if you had been more aware of the triggers of her epilepsy..and used the emergency medication at the right time.
dear mis/sir
my son is 13 years old & hypothyroidism,
i found your site in a google search engine.
my son had autism when he was 4 years old after we did all kinds of analysis
on one of the known hospitals in saudi arabia,they told me its more
electricitie in the brain and this is called autism.
they describe this medicene Retalin that had been given to him for 2 weeks but
he was having a bad side effects and the doctor stop it & give him Resperdal
as aliquid 1 gm for one year and they change the amount to bills 2gm until
before two days the doctors specify a new kind of medicene which is Zyprexa
and we are wondering if there is a better medicene for autism with
congenctal hypothyroidism and he is using:
1- Zyprexa 10 mg in two doses 5mg in morning & 5 mg before he sleeps
2- 150 mg of Thyroxine every day
thank you
@allama2003,
Thank you for writing—–is your son still taking the Risperdal too? I am not a medical doctor or physician and so am not able to suggest medications. One website that has a lot of information on medication:
http://www.rxlist.com/
no the doctor stop the Risperdal and write Zyprexa for him 10 gm/day
They suffer while it could be avoided. ,