We need to pay attention to what’s important. Consultation on the draft national autism roadmap closes on 27 September. Get busy and read it.
Earlier this month mainstream media was all over a so-called world-first Australian study that linked BPA plastic in pregnant women’s wombs to a higher risk of autism, particularly in boys.
The peer-reviewed study by the Florey Institute in Melbourne and published in Nature Communications, found boys with lower levels of key brain enzyme aromatase, who were born to mothers with high levels of the plastic chemical bisphenol A (BPA) in their wombs, were more than three times more likely to have autism symptoms by the age of two.
And by the age of 11, they are six times more likely to have had a verified autism diagnosis, the researchers reported.
To be clear, the study did not show plastics containing BPA caused autism, but that the BPS might influence oestrogen levels in young boys, which in turn could contribute to their chance of being diagnosed with autism.
But that didn’t stop the headlines:
- “BPA plastic in womb linked to autism, world-first study finds”;
- “The common food packaging ingredient linked to autism”;
- “Do plastics cause autism? Why new research on BPA has people worried”; and
- “Study suggests boys exposed to BPA in the womb more likely to have autism”.
The Conversation also tackled the subject.
Around the same time, the Department of Health and Aged Care quietly released its draft National Roadmap to Improve the Health and Mental Health of Autistic People.
And the silence has been deafening. I am yet to see a headline, a ministerial shout-out or anything to bring it to the attention of Australians.
This roadmap – which is part of the National Autism Strategy due to come out later this year – has been led by the Autism CRC and developed in collaboration with people with lived experience of autism, autism community members and other stakeholders.
It aims to address serious health inequities faced by autistic people in Australia, of which there are many.
I am the mother of one of them, a 26-year-old man.
My son is lucky he has an amazing neuropsychiatrist – just last week I asked him how long his waiting list was because I knew a few people who were desperate to get an appointment. His books are closed. And that’s in the private system.
We waited for two years to get an appointment with this specialist. During that time my son bounced from mental health service to mental health service. The acute and the sub-acute services couldn’t do anything. He was too complex, but not complex enough to warrant admission – even when he was threatening self-harm.
“It’s all behavioural”, was a popular turn of phrase I was offered, as a psychiatric registrar pressed a handful of useless brochures into my hands and sent us on our way. More than once the suicidal ideation had resumed before we even left the hospital car park.
After about 18 months of sometimes weekly presentations to EDs we gave up. It was just easier to ride the storm as best we could. It’s probably a miracle we are all still standing today.
Today things are different – they are still a long way from okay – but we have our own roadmap. And my soon has an amazing GP who talks his language.
That probably makes us lucky – there are too many people with autism, too many carers and families who are trying to find, let alone navigate, a health system that does little to cater for them.
The draft National Roadmap doesn’t mince words.
“In general, autistic people suffer poorer health than the general population, including greater risks of co-existing conditions and premature death. However, detailed knowledge of these issues is restricted due to a limited focus on autistic health research,” the report says.
“This is likely because traditionally autism was considered a behavioural and neuropsychiatric condition, rather than a different neurotype which coexists with a range of other health conditions.
“Autistic people experience an increased incidence of a wide range of co-existing physical conditions including epilepsy, gastrointestinal disorders, central nervous system anomalies, diabetes, muscular dystrophy, sleep disorders, autoimmune conditions, allergies, hypertension, obesity and thyroid disease.”
Increased incidence of a wide range of mental health conditions in autistic people was also highlighted.
“Common co-existing conditions include anxiety, depression, bipolar and mood disorders, schizophrenia and other psychoses, eating disorders, substance use disorders and obsessive-compulsive and related disorders,” the report says.
“Similarly to co-existing physical conditions, incidence of co-existing mental health conditions is not shared equally among the autistic population, which is presently also poorly understood.
“A significant factor that impacts autistic people’s health and mental health is their negative experiences of interpersonal interactions and social situations. Autistic people also often experience higher rates of bullying, discrimination and isolation, as well as higher rates of abuse and domestic violence.”
Studies consistently show a two to three-fold increase in the premature mortality rate in autistic people over that of the general population.
In a study of Australian mortality data, autistic people died at twice the rate of the general population, the report reveals.
“This is thought to be because of increased rates of co-existing health and mental health conditions, including completed suicides,” says the report.
“Suicidal thoughts and behaviours are more prevalent among autistic people compared with the general population. It appears that suicidal attempts are associated most strongly with co-occurring depression, and that other factors such as schizophrenia, adjustment disorders, anxiety disorders, and mood disorders may also be associated.”
And that’s just the detail in a couple of pages. There’s plenty more about what’s wrong – barriers to accessing appropriate health services, neurodiversity, and priority populations among this.
There are suggestions on how these problems can be addressed, for example through better education, different funding models to allow for more timely and affordable diagnosis pathways, developing guidance for health providers, tools to help improve the health literacy for people with autism, and my personal favourite: “Improving the quality, safety and availability of autism-affirming health and mental health care for autistic people across their lifespan.”
Autism is a lifelong condition that requires specialist care for the lifetime of the person with autism. And that changes.
When they are young it might be a paediatrician, a behaviour support specialist, psychologist, psychiatrist, occupational therapist, speech therapist – likely all of the above.
Adolescents and young adults need different care. Middle-aged and older adults with autism will have different needs again. But the services are scant, even in the city. And I should know.
This draft roadmap might not be perfect, it might not be the answer to all the problems, but at least it makes a first step. The great thing is that it is a draft and if Australians use their voices there is still time to change it.
What it does need is for people to read it. Not just people with autism, their carers and families, but also everyone in the health space. Clinicians, policymakers, support workers, everyone.
We have to speak up and tell the government what is missing, what else needs to be considered and how they would like the landscape to change to help them live their lives, do their jobs, look after their patients and help people with autism navigate their own health journey.
You have until 27 September, people. Get busy. You can read it here.