For years my everyday has been filled with planning my son’s
future; therapy, school, doctor visits, interventions, housing socialization, savings,
special needs trusts, the list goes on. Always, always my focus has been building a good
future for my son, and never once did I realize I could be fighting in vain,
until I read this.
My family has suffered a lot of losses over the
past 6 years, including the death of my mom and sister. The loss created a
pressing collective desire for the living adult women in my family to regularly
connect, and check in with one another, encourage each other, and share stories
at risk of being lost with our generation and often simply to listen to the
person who needed our ears the most. So, every week I hop on Zoom and sign on
not knowing what the topic might be, but filled with anticipation for seeing
the faces, that reflect my face, and hearing the voices of the women I love. During
a recent call my cousin talked about her new role as a caregiver, brought on by
her husband’s recent diagnosis of dementia. We quickly connected around the
truth that caregivers, no matter the patient, live a shared experience of
constantly seeking to bring balance into a world we no longer control. As we spoke,
she mentioned that dementia is an illness of the brain, that impacts the health
of the entire body and it would reduce her husband’s life span, which was extra
disturbing because he has gotten this diagnosis younger than most. When she
said that, although I physically remained on the call, I had emotionally
checked out. I felt such fear in that moment, fear that autism would lead to an
early death for my son! All I have done for
years is plan for my son’s future. Everything is always about the future and ways
to make it better; regular therapy, school, interventions, socialization, housing,
savings, special needs trusts. But, right at this moment I could not wait for the call to end so I could get assurance
that this was not the case, and my son would have the same life expectancy of
any other 23-year-old. Always, always
my focus has been on building a good future for my son. and never once did I
realize I could be fighting in vain, until I read this.
“One
of the most important investigations of recent years revealed that average life
expectancy of a person with severe
autism is 39.5 years, rising to only 58 years for those with high-functioning
autism, or Asperger syndrome.”
In this moment I felt like I had
been thrown back to the day when I opened my computer to look up the word autism
and read: “A permanent developmental disability requiring life long care, with
no know cause or cure”. That felt like a death sentence, a concept that I could
not comprehend, just like reading the paragraph above.
The difference today is, that I know
to read on, I know a lot of information get’s printed that only tells part of
the story, I know that we have already defined the odds, I know there is hope. And,
I know this because I did my research, I read everything and I did everything
the experts said to do to help my son, and it has worked. When Nick was diagnosed,
I sat in waiting rooms while he did therapies and mothers and fathers shared
everything they know. Today there are fewer waiting rooms, and fewer places for
our families to share information freely. And, that is why I am sharing this
article with you, and I beg you to read it, no matter how hard it is to read.
And after you read it, share it with your doctors and your friends, so they
share it with others. This is how we help our kids, and how we and we can
change the poor health outcomes and high death rates in autism, by sharing
information.
I know for sure that if we are diligent,
we can keep our kids healthier and we can demand that other caregivers not
phone in care, but provide the care they deserve to live their healthiest and
longest life.
So here is the article I read. Read, share and change this outcome……………………………..
“We must first recognize ASD as a whole body
disorder”
Autism, or Autism
Spectrum Disorder ASD, is traditionally seen as the result of behavioral and
neuropsychiatric dysfunction. However there is a strong evidence that various
physical, or biomedical, problems can directly cause many autism-related
symptoms and behaviors.
There is also growing
evidence that physical health-related problems can, through their influence on brain development and functioning, cause the core
autism symptoms that form the very diagnosis of the disorder.
It is an undeniable
and sad fact that individuals with autism suffer much poorer health and shorter
lifespan than their peers without autism. One of the most important
investigations of recent years revealed that average life expectancy of a
person with severe autism is 39.5 years, rising to only 58 years for
those with high-functioning autism, or Asperger syndrome.
It is therefore very
welcoming to see a peer-reviewed research paper that highlights a number of
physical problems associated with autism, and discusses how to overcome the
roadblocks and challenges in providing appropriate health care for those
affected by autism.
“There
is a wealth of scientific data demonstrating the over-representation of various
mental and physical health conditions alongside ASD. There is, however, still
insufficient recognition amongst healthcare professionals that such symptoms
could be related to comorbid physical health conditions rather than being
commonly dismissed as “part of autism” or “autistic behaviors”.
In
this paper, we provide a literature review of the key physical comorbidities
identified in people with ASD covering the areas of neuroinflammation and
immune dysregulation, GI dysfunction, metabolic abnormalities, as well as
seizure disorders such as epilepsy.
We also discuss how healthcare
professionals…have a duty to be informed about the challenges and
considerations in identifying physical comorbidities in this population.”
In the paper ‘Bridging the Gap Between Physical Health and Autism Spectrum
Disorder’, recently published in the journal Neuropsychiatric Disease
and Treatment, the authors explain how autism does not typically appear as a
stand-alone condition.
Various health
conditions that are common in autism can not only have a detrimental effect on
daily functioning, social communication and behavior, but they can also
increase the risk of developing serious medical conditions and lead to early
mortality.
The paper highlights
some of the conditions affecting the immune and gastrointestinal systems,
metabolism, and brain function in autism. It discusses how professionals,
working with those with autism and their parents and care givers, should recognize
the impact of such conditions on individuals’ lives and long-term wellbeing.
The authors lay out
the argument that the main barrier to better awareness and recognition of
health issues in autism is the paradigm within which many healthcare
professionals operate that erroneously sees autism and all associated symptoms
and manifestations as being solely the result of behavioral and
neuropsychiatric dysfunction.
Dissolving myths about poor health outcomes in autism
Most medical conditions are significantly more
prevalent in individuals with autism than in typical population. They span a
whole range of different disorders affecting various systems of the body
including neurological – involving both central and autonomic nervous systems –
immune, gastrointestinal, and metabolic disorders.
Poor health outcomes and early mortality in autism are
often explained away solely by the fact that individuals with autism are less
able to communicate their symptoms to healthcare professionals, are more likely
to skip regular health checks, and may avoid visiting their GP altogether.
While such factors certainly could contribute
to negative health outcomes in some cases, their role is dwarfed by the evidence of physical health problems being not only persistent
during the whole lifespan, but also being intrinsically linked to the very
emergence of autism.
Results from multiple large scale studies have
shown that early-life health conditions differentiate babies and toddlers who are at
high risk of developing autism. Infant dysregulation and signs
of physical distress such as feeding and sleeping difficulties, and abnormal
crying, can be used as red flags for early autism screening.
Children who are exposed to pregnancy or birth
complications, such as preeclampsia, premature separation of the placenta,
meconium-stained amniotic fluid, or shortage of oxygen during birth, are
much more likely to be diagnosed with autism later
on.
More importantly still, medical problems also override genetic factors for autism. In pairs of identical twins where only one
twin has autism researchers found significantly higher rates of autism in those
siblings who had a history of early medical problems, such as fetal distress
and hypoxia during delivery, minor infections (for example throat or ear
infections), allergies and seizures. At the same time their genetically identical
siblings who did not experience such adverse physical events often did not
develop autism.
What can be done to improve poor health and high death rates in
autism?
Recognizing the physical problems in
individuals with autism can be challenging. The paper explains the main reasons
why and how to overcome them.
One of the barriers to effective
identification of physical issues in autism is that their expression can be
atypical. Individuals with autism often respond to pain and discomfort with
what the others see as ‘odd’ or challenging behaviors—for example aggression or
self-injurious behavior in individuals with autism can be the primary symptom
of a hidden physical condition.
However, the largest roadblock to better
recognition and treatment of health problems in autism, as identified by the
authors of this paper, is the framework within which most healthcare
professionals operate, and how they view their patients with autism.
In many cases a healthcare professional will
erroneously believe that autism is solely a behavioral dysfunction. He or she
will not be familiar or not even aware of the mountain of scientific data on
the intrinsic connection between autism and physical health.
“Symptoms such as grimacing,
appetite disturbances, insomnia and strange postures are not core
features of ASD. A considerable volume of scientific evidence points to
the possibility of an underlying physical cause to such behaviors.
To avert diagnostic overshadowing, screening for physical conditions should be
initiated when such behaviors are observed.”
As a result of the wrong paradigm in which
they see their patients with autism, the healthcare professional will not be
attuned to the high risk their patient faces and the physical strain they could
be under.
Healthcare professionals will also not be
attuned and able to recognize symptoms of medical problems when those manifest
simply as ‘odd’ or challenging behaviors. They will instead dismiss those as
‘autism behaviors. This can happen even when the symptoms could be indicative
of serious and potentially deadly medical issues.
Finally, the authors recommend that in order
to reduce morbidity and preventable death in autism it is of utmost importance
to provide regular physical health checks and to maintain high level of
clinical suspicion towards physical health problems in autism.
Sala R, Amet L,
Whiteley P, at al. Bridging the Gap Between Physical Health and Autism Spectrum
Disorder.
Neuropsychiatr Dis Treat. 2020;16:1605-1618 https://doi.org/10.2147/NDT.S251394
