Hopeful is a word filling my head lately. As the maiden moves deeper into living and learning to navigate the world as an adult with Fetal Alcohol Spectrum Disorder (FASD), I worry about what the future holds for her but try to remain hopeful that it will be a more accepting place for her.
The above statistic, released in a report last year, frightened and shocked me. How could I remain hopeful that the maiden would have a full life if the average life expectancy was 34 years of age? The report revealed the leading causes of death for people with FAS were “external causes” (44%), which include:
- 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%).
NOTE: Since this Study was published there has been additional details which put into question the validity or value of applying results across the board. Details of individuals were not published so it is difficult to know the situations of the individuals. It was also hoped that publishing it as is, would attract additional funding – which it did not. Quite a few flaws were identified so the results should be taken in a broader context of this is what could happen without supports – not what will happen.
If I read this information in the above chart correctly, it shows 6,013 individuals with FAS with a total of 113 deaths. The Report states this was over a 10 year period, from 2003 to 2012. So at first glance, when you see the headline, it seems concerning. And it is if there are no supports. But 113 deaths of individuals with FAS in an almost 10-year span can not be said to be true for the 1.5 million estimated individuals with FASD in Canada.
We are finding out more information as time goes on. Another recent study found adults with FASD have greater illness rates than the general population. CBC British Columbia reported on the survey results from 541 people living with the disorder in Canada and the United States. It was co-authored by Myles Himmelreich, CJ Lutke and Emily Travis. You can find more information on this Study here: Day 55 and 56 of 99 Days: FASD is a Whole Body and Health Disorder
Of over 260 questions pertaining to conditions in 25 areas, such as hearing, autoimmune or cardiovascular disease, they found that people with the disorder experienced health problems at a rate that was anywhere from two times to more than 100 times higher than the general population.
Among the general population, about five to eight per cent of people suffer from a total of 80 autoimmune diseases. Yet the survey found that 29.5 per cent of people living with fetal alcohol spectrum disorder who were surveyed reported having at least one of only 10 of those diseases, including rheumatoid arthritis, celiac disease and lupus.
The rate of chronic ear infections among adults who were surveyed was 147 times higher than the general population, and 8.1 per cent of those who took part in the survey reported having hearing loss or problems that began after the age of 20.
Early onset dementia, which happens in people under the age of 65, also affected people in the study at a rate that is 104 times higher than the general population.
Anne Streissguth looked at outcomes for people between 6 – 51 who have FAS:
Of the above long-term consequences chart, we are 3 of 6. However, the maiden is not diagnosed with FAS. Trying to avoid the other 3, while navigating the new adult world is exhausting, however. When she turned 18 all support services ended. She was transferred to the adult world. But while many 18-year-olds are planning their futures and getting on with their lives – we are stuck in a holding pattern. The waitlist for adult services in Ontario is between three and ten years – depending on what service is required.
As the above graphic illustrates, although the maiden is 18 years old in age, her skill level varies. These developmental ages are approximate and generalized based on studies. Although her development has been varied all through her life, adding the age of majority into the mix has created some new challenges I am just starting to discover. There is a wide variation between developmental age and chronological age. This difference makes it even more difficult to support her because in some areas she has the skills of a much younger person, yet in others is typical or even “older”. She is an adult in the eyes of the world around us, and as such is allowed certain privileges, yet she still needs assistance. But these are lagging skills. I have noticed that as she moves past 18 her ability to pick things up is much better.
There are glimmers. Science has shown an adolescent brain continues to develop until the age of 25. Many caregivers who now have adults have said that between 25 and 30 they see a lot of growth. There is time to be persistent, consistent, maintain structure, support and accommodation. While we still have a long way to go in recognition, understanding and supports required, we do know a lot more than we did 10 years ago when the Life Expectancy Report came out and in 26 years since Streissguth’s Report.
Obviously, I know her like no other person, yet there is not a lot of information about supporting adults. Some days I don’t know how to best support her as an adult. According to an article I found on the National Organization for Fetal Alcohol Syndrome website (NOFAS), now FASD United, they breakdown the difference between a “neurotypical” 18 year old and an 18-year-old with FASD in this way:
Another resource from Community Living British Columbia (Canada) called Supporting Success for Adults with Fetal Alcohol Spectrum Disorder contains tips and strategies for caregivers and people who work with those affected by FASD.
The booklet stresses:
Adults with FASD have often experienced chronic failures and wounding. Building on successes is vital to promoting and maintaining positive self-esteem.
Interventions should focus on changing the environment to enhance the potential for success, decrease frustration and maximize creative support options
And while this is nothing new, as this is what needs to be done for younger children, being an adult brings about a new world of challenges the maiden (and I) are going to have to learn how to navigate.
Some strategies for creating environments that support success:
- Build on Gifts: What is the person good at? What is a strength or ability the person has?
- Stay Curious: Respectful support begins with honouring the uniqueness of each individual.
- Language Matters: Remember these individuals use and process language differently.
- Safeguards are Important: to reduce risk and vulnerability. These safeguards include both formal and informal friendships, personal support networks, neighbours, social connections, community connections, clubs, volunteer and work.
“In supporting people with FASD, the emphasis should be on establishing functional and supportive structures rather than imposing control.” What would this look like?
Developing a schedule and assistance with:
- Self care routines
- Money and budgeting
- Shopping and Meal Preparation
- Household upkeep and maintenance
- Work (paid or unpaid)
How do I create a life filled with hope for the maiden? My journey learning to support her as an adult has just begun. I am seeking out resources written by professionals, caregivers and adults with FASD. Even though each individual with FASD is unique, I should be able to learn from the collective experience of this group who have or are travelling the adult road.
The Road to Adulthood is a Bumpy Ride
What makes this journey so bumpy right now is I have no one to help us.
She qualifies for assistance through Developmental Services Ontario. But she is on the wait list.
Having a Mild Intellectual Disability, she qualifies to remain in school until she is 21 in the Learning and Life Skills program. I thought that would buy us some time while we waited for a support worker, employment support and access to day programs. However, last week she announced she does not want to go back to school.
Legally, she can leave school. She has obtained an Ontario Secondary School Certificate so she does not need to be there. She does want to go to a two year supported college program for adults with intellectual disabilities – we are still waiting to hear if she is accepted. But what am I supposed to do with her for the next six months?
I was fortunate enough to be able to stay at home to support her as a child – but that is no longer the case. I am looking for a job to support myself right now. She can’t be left alone all day. We live in a small rural village and there are no programs she can go to.
It’s difficult to remain hopeful when we are stuck on this road filled with obstacles to success.
A Glimmer of Hope in the Distance
But just when I’m feeling depressed and out of hope, along comes something (or should I say someone) which gives me a boost. I will leave you with a link to a very personal and powerful video I’m not broken. I don’t need fixing., by Myles Himmelreich, an adult with FASD. He speaks eloquently and honestly about the isolation and stigma he and his mother faced, and he still faces, because of the ignorance and stereotypes that still surround Fetal Alcohol Spectrum Disorders. Yet he shows us that he is not defined by his diagnosis. He challenges us to see him.
It is difficult to not talk about the challenges faced by people with FASD. I struggle with how to share what our day-to-day life is like while trying to maintain the privacy that is respectful to the maiden. Yet if I don’t share what our life is really like people will not understand how difficult the road is.
I am hopeful, with education and acceptance, the world will become a more welcoming and inclusive place for all.