NB and Canada Must Wake Up and Confront the Autism Premature Mortality Crisis

"Autistic people die on average 16 years earlier than the general population. For those with autism and learning disabilities, the outlook is even more appalling, with this group dying more than 30 years before their time."

 Autistica: Personal tragedies, public crisis, page 3, executive summary.

As set out in the Autistica Report  the recent very large Swedish study adds to a well documentef but largely ignored reality: There is a shocking health crisis which society must address: the early deaths of persons with autism disorders.

NB and Canada have given no indications that they are aware of this crisis let alone how to deal with it.  It is time we all woke up in this country and come to grips with this shocking reality.

Autistica is a leading UK autism research charity which both funds and campaigns for medical research to understand the causes of autism, improve diagnosis, and develop new treatments and interventions.

From the Executive Summary, Page 3:

Many families and autistic individuals have raised concerns over early deaths in autistic people. Ground-breaking new research now confirms the true scale of the mortality crisis in autism: autistic people die on average 16 years earlier than the general population. For those with autism and learning disabilities, the outlook is even more appalling, with this group dying more than 30 years before their time. 

Research studies across the world have confirmed that autistic people are at an increased risk of early death. A large study from Sweden in late 2015 made this case stronger than ever by analysing a very large, high quality dataset to compare the general population, autistic people, and people with both autism and a learning disability. 

Two findings relative to the general population are particularly striking: 

Yet there is still very limited awareness and understanding of the scale of premature mortality for the 700,000 autistic people in the UK and hence very little action to date to reduce it. This hidden crisis demands a national response. 

The large Swedish study as reported by Autistica points out that there are a number of reasons for the shocking early mortality rates of autistic adults but indicates two factors which are particularly significant causes of early death: epilepsy among persons with autism and learning disabilities and suicide among those with autism without a learning disability as stated in the image above:

Epilepsy in autism 

Between 20% and 40% of autistic people also have epilepsy and this rate increases steadily with age – in contrast to a one percent prevalence rate in the general population. 10 In the typical population, the risk of epilepsy is greatest in a child’s first year, decreasing in risk through childhood, then remaining stable and not increasing again until old age. 11,12,13 In the majority of autistic people who develop epilepsy, their seizures do not appear until their teenage years, much later than average.5,14 This suggests that the underlying triggers of epilepsy may be different in autism.

 Autistic adults who also have a learning disability have been found to be almost 40 times more likely to die from a neurological disorder relative to the general population – with the leading cause being epilepsy.3 Despite the very high prevalence of seizures in autistic people and the high death rate from epilepsy, there has been virtually no research to establish whether treatments used for epilepsy are safe or effective in the autistic population. More research is urgently needed into the relationship between epilepsy and autism and the impact of epilepsy over the lifespan in autistic adults.

Suicide in autism 

After heart disease, suicide is now the leading cause of early death in adults with autism and no learning disability. Indeed, the recent Swedish study found that adults with autism and no additional learning disability are over 9 times more likely (relative to a general population) to commit suicide.3

The recent report from the Mental Health Taskforce identified autistic people as at higher risk of mental health problems.15 Indeed, research indicates that 70% of autistic individuals have one mental health disorder such as anxiety or depression, and 40% have at least two mental health problems.4 When these issues appear alongside autism, mental health difficulties can go undiagnosed and untreated. 

Multiple studies suggest that between 30% and 50% of autistic people have considered committing suicide.16,17, 18 One study found that 14% of autistic children experience suicidal thoughts compared to 0.5% of typically developing children.19 Another recent study of adults with Asperger syndrome found that two-thirds of participants had lifetime experience of suicidal thoughts and a third of participants had planned or attempted suicide.20 

While there are certainly examples of good practice in some locations, the comparative statistics indicate that the majority of mental health and related services are not sufficiently skilled to meet the needs of autistic people with an additional mental health problem, including suicidal thoughts. Numerous personal accounts illustrate how this impacts on the lives of autistic individuals and those who love them. 21