New Brunswick Lacks Real Autism Awareness
In making that statement I mean that there is no real autism awareness created by statements that do not include the fact that between 44% (US CDC) and 50% (WHO) of persons with an autism spectrum disorder also have an intellectual disability. In fact it will be very rare for any community or "autism" organization to refer to autism as either a spectrum which includes persons with ID or even that autism is a disorder. There is no mention of self injurious behaviors or of the seizures from the epilepsy that often accompanies those with autism and intellectual disability. There is no mention of the fact that autistic adults with severe autism related challenges often live with their parents until their parents can no longer provide adequate care or until their parents pass away.
One of the most disturbing autism facts ignored by media and public community organisations in Fredericton and across New Brunswick as a whole is the fact that adults with autism tend to have very short life spans compared to the general population passing 16 - 30 years sooner than otherwise. The UK autism charity Autistica to its credit does more than simply promote blue lights and super hero costume walks. The Autistica report is based on a large, high quality Swedish study reported in the British Medical Journal and subsequently commented on publicly by Autistica:
People with autism die 16 years sooner on average than they otherwise would, and those whose autism is combined with intellectual disability die 30 years sooner. Death comes earlier to autistic people, whatever the proximate cause. But epilepsy, which is diagnosed in 20-40% of autistic people, is a major cause of death, especially in those whose autism is severe and combined with learning difficulties. Among those who are autistic but with less severe symptoms, suicide is a common cause of death, especially among women.
People with autism die 16 years earlier on average,says charity, Hawkes, Nigel. BMJ : British Medical Journal (Online); London
352 (Mar 17, 2016)
352 (Mar 17, 2016)
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.
NB lacks autism awareness but it does not have to be this way. The UK Autistica is an example of an autism charity that does speak honestly about autism. Speaking publicly about the harsh realities facing many, particularly adults, with autism is not being negative. I have always tried to be honest and forthright in describing these harsh realities. That approach has not stopped me or Conor's mother and brother from ensuring his happiness while in our care. The pictures that follow are proof of the joy he experiences and adds to those who love and care for him:
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