My name is . On July 5, 2020 my 25 year old autistic son jumped from the
fifth floor balcony of our apartment and died.
My son was very loved in his family and also the hard core music scene in Sydney who have gathered around us and supplied much support. My wish here is to describe some failures of the emergency medical system earlier this year. I have no wish to be litigious. I see that there are some gaps in his treatment during an earlier suicide attempt in 2020. If his presentation at ■ emergency had gone differently, the result may still have been the same, but there may have been an opportunity to save him. I hope we can examine what happened, what was missed, and current policies around suicidal presentations in the autistic population.
Medical/therapuetic support system
My son had demonstrated some suicidal ideation in 2018. I set to finding him a network of support with the help of NDIS for which I whole heartedly thank Julia Gillard. He had a wonderful therapist, , psychiatrist, , speech therapy services from and a host of other helpers through dietetics (he never met a vegetable he liked), exercise physiology, occupational therapy and general practice doctor . He seemed to be going well sometimes and others in a holding pattern. In the period of 2019-2020 I noticed his emotional state degenerating. I was working up north and left the day to day care to my retired
husband who gave 100% of his focus to his son. also had a good deal of early
intervention under the age of 8 under the American disability support system. He was born in the U.S where his original diagnosis was made.
Social Supports
was verbal and high functioning enough to hold a volunteer job at an expert witness firm in doing odd jobs and delivering paper work to other firms across town. His employer/co workers embraced his essence and personality in a work place with a lot of heart that allowed people to bring their dogs and where workers often lunched together rather than alone at their desks. was highly musical and attended many concerts around town in the hard core music scene. I have been gratified by the degree of love and appreciation his ‘tribe’ in this scene have shown us his parents after his death. He was living with his father who cared for him all day every day. They also took trips overseas together to continue his relationships with friends in the US.
Diagnosis
was diagnosed with depression originally when he was about 14. He saw a therapist at this time for a few months. Embedded in my sense of this diagnosis was that it was reactive to his growing awareness of his autism and a sense of his limitation and vulnerability in life. I may have been wrong. depression may have been independent of his autism thus a brain based depression, exacerbated by autism but not necessarily caused by it. I am a psychologist and I believe have been ignorant as are many medical and allied health practitioners. For example, it does not necessarily follow that autistic people get depressed because they are autistic. There are higher correlations, certainly, but perhaps we accept it as inevitable rather than unusual or urgent. We accept it too easily. Many of us just think that it goes with the territory. This stops us from asking more questions and delving deeper into whether it is an endogenous (brain based) depression or a reactive one (the circumstances of your life are tough). This is vital. When an endogenous depression is met with a lot of behavioural intervention, encouragement and well meaning pep talks, the sufferer may feel even more hopeless. RUOK may make these sufferers feel they are inadequate for not being able to connect with care rendering them feeling even more alone.
Admission tolllllllllllll public January 2020
In late January– was caught on closed circuit camera crossing the barrier on the top of the 29th floor of our building. He was noticed by a workman who pulled him back. He was apparently incoherent and was sent to – by ambulance under a section 22. I only discovered this after his death in July by an attending detective, . I was not told by his father and was not informed by the hospital. I have contacted medical records at – to see all paperwork connected with his admission. Once I receive this I will forward it to you. The detail I have is that he was released within hours of admission to the care of his father. There was no discharge plan, no follow up and no contact by the local area mental health team.
A little background research
I have had a cursory look at some of the literature around this. I have not found any independent extant batteries for the diagnosis of depression or suicidality specific to this population. It seems that the measures and analysis are adapted from testing and assessment from a neurotypical population. UNSW Neuropsychiatrist Jullian Troller has stated publicly that the medical system has great gaps in understanding this population and sees a need for better and more specific training.
Analysis of– admission
1.1believe that being released hours after a section 22 admission robbed– of the opportunity for observation over time in a pee ward. 2.1 am not understanding hospital policy that did not include a discharge plan, any follow up by the hospital or the mental health team in our area. 3.1 was not contacted by the hospital because he was released into the care of the other parent and because he was over 18. An autistic man over voting age is being viewed as a neuro-typical man with the same ability to interpret and care for his health. He was clearly experiencing a terrifying internal turn of events without the ability to understand or communicate what was happening to him. father did not tell me about this admission. Further conversations with him about this have revealed to me that his interpretation of events was unclear and possibly in denial about the4- progressive danger of his son’s condition. This child was the love of my husband’s life. It brings to mind an importance of studying the parent as well as the child. My husband didn’t know what he didn’t know. I didn’t know what my husband didn’t know.
In an article from Spectrum Magazine on-line the author states:
“Until medical schools incorporate information about autism into their curricula, doctors and autistic adults have another resource to help them communicate and build better relationships. In 2016, scientists developed an online healthcare tool kit that offers a multitude of resources, from medical, legal and ethical information to worksheets that can help autistic people manage appointments. The tool kit is accessible through the Academic Autism Spectrum Partnership in Research and Education (AASPIRE), a research collaboration between several organizations.
The centerpiece of the tool kit is an ‘accommodations report’ that an autistic adult or her caregiver can fill out and give to a doctor to inform treatments. “Because everybody on the spectrum is going to be different and have different needs, it’s really hard for me to tell a provider, ‘These are the things you have to do to take care of adults on the spectrum,”’ says Christina Nicolaidis, an internist who leads the project. “[The accommodations report] provides really concrete, actionable items that providers would need to know,” she says - items such as an autistic person needing to have dimmed lights during an exam or to know how many test tubes of blood the clinician might draw.
Nicolaidis and her colleagues tested the tool kit in 170 adults with autism and 41 primary care doctors in 2016. The participants reported that communication with their doctor improved one month after they received the tool kit. The next step, Nicolaidis says, is to see if the tools can be incorporated into primary care practices, as opposed to something individuals take to their physician. To find out, she’s collaborating with three large healthcare networks, two in Oregon and one in California. (Croen, at California’s Kaiser Permanente, is a collaborator.) In January, they launched the two-year study, which includes around 220 people at 12 clinics, about half of which will use the tool kit.
I also believe that the social distancing of Corona Virus may have exacerbated the situation. His services stopped over this period and appointments such as a review by his psychiatrist were rescheduled to a later date.
In Memorium
is now a statistic. He was also an individual who I see as having been in this world but not of this world. He had an open channel of sensitivity for music and an empathic ability (not typically associated with the diagnosis) to connect with other people, especially those with whom his resonated over loneliness, vulnerability, isolation and love of music. Many of these friends are affected and wounded by his suicide, now putting further people at risk for problems of mood and trauma. had a difficult genetic load and there is a history of endogenous depression along the male line of my family. I believe that abilities of sensitivity were almost savant-like but the complications of his non-neuro typical brain made it very hard for him to channel and manage that empathy. He couldn’t shut it off. I feel he was crushed under the weight of it. I never say things happen for a reason but we can make a reason out of what happens. Please help us change things for our beautiful boy.