Trigger Warning: Death and Causes of Death
It isn’t 34. Every couple months in different FASD groups I’m in someone posts about the Life Expectancy of People with Fetal Alcohol Syndrome Study by Thanh and Jonnson. Typical reactions, rightly so, of shock, worry, fear and disbelief to anger and outrage. The slant of the Study is misleading and is not extrapolated to the general population, so it’s false. While the average life expectancy for the people in that study might have been 34, the life expectancy of all people with FAS (or FASD) is unknown.
I reacted like everyone else when I first read the Research. You can read it here: Navigating life as an adult with FASD. Since that post, I discovered the results were not an accurate representation of ALL individuals with Fetal Alcohol Syndrome (or FASD with Sentinel Facial Features). I did update it, but since then, I’ve learned a little more. I thought I’d put it in a new post.
Please note, these are my thoughts, and interpretations, so if I’m wrong, feel free to correct me or add additional details.
In this post I share:
- What I understand
- Canada FASD Research Network (CanFASD) Messaging Guideline
- Part of a response from R.J. Formanek, FASD educator, speaker, co-founder of Red Shoes Rock, and individual with FASD (& over 34)
The Study, Additional Information & Reflections
The objectives: To estimate the life expectancy and specify the causes of death among people with fetal alcohol syndrome.
Included were all patients recorded in Alberta provincial databases of inpatients, outpatients, or practitioner claims from 2003 to 2012. People with FAS were identified by ICD-9 code 760.71 and ICD- 10 codes Q86.0 and P04.3, and were linked to the Vital Statistics Death Registry to get information about mortality.
Life expectancy was estimated by using the life table template developed in the United Kingdom, which is recommended for estimating life expectancy in small areas or populations.
If I understand it correctly, we are talking about 113 people with FAS who died over a 10 year period. Out of 6,052 people with FAS.
There were limitations acknowledged. First, “as this study was based on administrative health databases, people with FAS who did not use health services during the study period (2003 to 2012) were not included. Second, there may be a misclassification bias for FAS cases identified by ICD-9 in the practitioner claims database.”
So they acknowledge that these results are based on people who accessed services and died. Since they looked at death records, we do not have any information about the people who died, other than what the cause of death was.
They did acknowledge that “without early diagnosis and support, individuals with this disorder are at high risk for a number of secondary disabilities, such as mental illness, homelessness, substance abuse, and unemployment.”
We know those “secondary disabilities” are actually adverse outcomes that can happen due of lack of support, whether diagnosed or not.
The leading cause of death was “external causes” (44%), which was broken down into:
- suicide (15%)
- accidents (14%)
- poisoning by illegal drugs or alcohol (7%)
- other external causes (7%)
Other common causes of death were diseases of the nervous and respiratory systems (8% each), diseases of the digestive system (7%), congenital malformations (7%), mental and behavioural disorders (4%), and diseases of the circulatory system (4%).
Some people comment that even though they know it’s misleading or old information, they still use it because it is a wake up call to get supports. But no one mentions that while 113 died during that period, almost 6,000 lived.
My concern, beyond the sensational and fatalistic presentation of the results, is, if we want good data, research and respect from the community, we should be upfront about this Report. An average life expectancy reflected from 113 deaths of individuals with FAS, in an almost 10-year span, can not be said to be accurate to and true for the 1.5 million estimated individuals with FASD in Canada (where the study was done) in 2022.
I have heard from different sources the researchers wanted to get additional funding, which didn’t happen. So many people are left to think this limited study is representative of the entire population.
I learned the main researcher is an economist. You may remember another economist who did her own research studying data to debunk the no drinking during pregnancy message and the backlash from that.
FASD Common Messaging Guide
CanFASD did include the Study (and others) in their 2022 Updated Common Messaging Guide, (see Emerging Research on Page 12).
Research tells us: Some researchers have reported that individuals with PAE and FASD may experience a reduced life expectancy, accelerated aging processes, and increased risk for hospitalization and mortality. This research is preliminary and should therefore be interpreted with caution.
Why this Matters: Fatalistic messaging can increase stigma and hopelessness for individuals with FASD. Messages related to life expectancy should be appropriately contextualized and accompanied by messages of healthy outcomes.
Limitations: Research in this area is in its infancy, limited geographically, and lacks generalizability.
Take-Away Message: Individuals with FASD may be at risk for poorer medical outcomes, but these are not guaranteed Access to adequate supports and services can alter long-term trajectories
Although I like the first part of the messaging, the take away message I don’t think addresses the concern of the inaccurate (to general population) or limited results from the Study. But it’s a start.
A Few Thoughts from R.J. Formanek
I am 58, and nowhere near the oldest person with FASD I know of, so don’t be alarmed by that study. This is about you and your life. Develop your own team. Build it with whomever you can trust. Even if it starts with one or two people. I am not talking a coach or mentor, but someone you trust who can give their opinions when asked.
We need those people around us, often just to help touch base when we might lose the plot now and again. The more people you can get on your team the better it is for everyone. We don’t want to stress our team, in fact we want to help each other find ways forward.
Life goes on, day by day and you will get there. You can do this, in fact as you enter your 30s and beyond I would wager you will find many things getting somewhat easier as your brain fully matures. Yes… fully matures.
We have found our developmental timeline is unlike neurotypicals and very often there is a ‘catch up’ phase between ages 30 and 40 where our brains start to work better. Streamlined thinking process will open up new abilities to understand the world.
Hang in there, nothing stays the same forever. 🙂
What is True
At this point in time, there is no known Study that examines the average life expectancy of individuals with PAE / FAS / FASD with enough information to make a statement that is reflective of the general population.
We know that while there are medical conditions that affect individuals with FASD at higher rates than the general population, with diagnosis, support, understanding and services, many individuals have more success and opportunities to thrive and live well beyond 34.
This does not mean that we do not continue to advocate for supports or research to examine health concerns. Part of the 99 Days to FASDay looked at research that was done and is being done: FASD: A Whole Body Disorder with 428 Co-occurring Conditions.
It does mean, now you know, I hope you can breathe a bit of a sigh of relief. I hope you question research when you see alarming headlines. And I hope if you do share that Study, you consider how and where to share this information.
I purposely have not linked to this Study because I do not want to contribute to search rankings which will place it higher so more people will see it.