INSiGHT Research Ltd

To mark Autism Awareness Month, its good to consider how to create built environments that are accessible and comfortable for autistic individuals, to reduce sensory challenges, and enhance their quality of life.

I conducted an 'umbrella' systematic review of research into the design of built environments for Autistic people in areas where they live, learn, work, and seek health care. Ten peer-reviewed systematic reviews representing 224 unique studies were identified, appraised and synthesised.

Evidence was then considered by the Living Guideline Group, an advisory group of 11 experts with lived and professional experience of autism. They developed evidence-based recommendations which are summarised in the slide deck.

The sensory needs and preferences of autistic people vary between individuals and at different times for the same person. So advice emphasises flexibility and the ability to tailor the environment to individual needs. As such, built environment strategies intended for autistic individuals can also meet the needs of undiagnosed autistic people and other neurodivergent people.

This advice updates the Aotearoa New Zealand Autism Guideline (He Waka Huia Takiwātanga Rau). This mahi/work is led by INSIGHT Research, and funded by the New Zealand Government.

The full Living Guideline Supplementary Paper can be found here: https://lnkd.in/dXnunTjt

Paracetamol doesn't cause autism - let me explain why the research doesn't stack up. 🤰💊

I have seen well-meaning advocacy announcements saying that "there isn't sufficient evidence" that there is a link, or that "it isn't proven."

These statements can make us insert the word "yet" at the end... Because they make it sound like we will find a link if we keep looking. That where there is smoke, there is fire. Surely there must be something in it (this is why the vaccine–autism link is so sticky even though it's been 100% scientifically debunked).

Methodological critique of autism research is my day job and so maybe I can help explain instead of just saying "take my word for it, it's a lot of crap" (which is what most experts have implied).

📚🔍In the meta-analysis (summary of 47 studies) RFKJn and Trump are alluding to, a weak (5-7%) association was found between taking the over-the-counter pain killer acetaminophen (sold as Paracetamol or Tylenol) in pregnancy and having a child diagnosed as autistic. But there are confounders, a fancy way of saying there are other reasons for the (weak) link.

(1) Mothers experiencing infection, fever, migraine, or pain may have other conditions (eg, diabetes, Ehlers-Danlos Syndrome) that we already know are related to autism.⚖️🩺

(2) We know autism is highly heritable. Autistic mums or mums with autistic traits have greater sensitivity to pain and different experiences of pain due to sensory sensitivities. 🧬🤰https://tinyurl.com/a46mt5z2

In both cases, this may mean that women may be more likely to use pain killers in pregnancy. They pass on their genes (related to autism) to their children who – boom – are more likely to be diagnosed as autistic.

(3) Recall biases. It is well know that people look for a reason for why they or their child have a condition. When asked, they look back and are more likely to remember doing things that they suspect may have had an effect (like taking medication).

This is often seen in observational research. For example, it was long thought that a bump to the breast could cause breast cancer because women with breast cancer were more likely to remember and report receiving a bump.

Notably, the authors of the meta-analysis themselves conclude :“We cannot answer the question about causation". And on the day of Trump's presser on the issue, the FDA said “a causal relationship has not been established” https://tinyurl.com/y62hh5tw.

(4) There is robust evidence from a recent population-based sibling-controlled study published in the highly reputable Journal JAMA in 2024 involving 2.5 million children.

Mothers' use (and amount) of pain killers in pregnancy was compared for their autistic children with their non-autistic children. This controlled for "confounders" as the mother's pain sensitivity, medical conditions, and environment were basically the same for both children.

The study measured use of pain killers during pregnancy prospectively – that is, tecorded from antenatal and prescription records during pregnancy rather than from remembering later). So there were no recall biases. This is a much more scientific way to determine causality.

📣The study concluded that there was "no association with autism". And they suggest associations observed in other models may have been attributable to confounding (see 1-3). https://tinyurl.com/2han37wb

🩺⚖️We know paracetamol should be used sparingly in pregnancy, and is toxic in overdose. But in cases of high fever, it is very dangerous for the mother and the developing baby if it isn't brought down by this medication.

And you know what? Autistic people reflect natural human diversity and bring so many gifts to our world. They have been in human history forever and have give us some of the world's finest thinkers, inventors, and artists. Let's not talk about autism as if it's a disease to be prevented or cured. 🙏❤️♾️ 🧠

What would I know?
I am a systematic reviewer specialising in autism, and have published 17 systematic reviews in the area. I deliver the Living Guideline programme of work for the NZ government and have led annual revisions to the NZ Autism Guideline since 2009, and revised its 2nd and 3rd editions.

Acetaminophen Use During Pregnancy and Children’s Risk of Autism, ADHD, and Intellectual Disability

🙏 Reject the framing of autism causation and avoid myth busting

We hear that an announcement is imminent from RFK Junior linking autism to a commonly used over-the-counter medication...

As a systematic reviewer specialising in autism, I could engage critically and point out the many flaws and assumptions behind this 'link". Instead, I suggest we avoid myth busting for 2 reasons.

(1) Cognitive science shows us that repeating falsehoods makes them more believable (we basically are greasing the neural pathway to that association)

So by repeating the alleged link we inadvertently do the following:
- we give attention to it ("stop thinking about an elephant" doesn't work)
- we make people think the alleged risk is true (no smoke without fire?)
- we increase the likelihood that people will accept it as true (as it seems more believable due to the greasy pathway)

(2) By debating causes of autism we are accepting this framing of autism as a disease. And that is misguided, offensive and harmful.

Autism is not a disease. And it is not something one should "blame" anyone for "causing". It is not something we want to cure or prevent. It is a different way of being reflecting diversity that has been part of the rich tapestry of humanity forever. It is largely hereditary. Without it we wouldn't have so many of the world's greatest scholars, scientists, artists, thinkers, and actors. Without it I wouldn't have many beloved family members, friends and colleagues who enrich my life and make the world more beautiful.

What message are we sending to our Autistic community if we allow ourselves to accept this disease model framing inherent in RFK Jr and Trump's announcement? So let's change up the discussion. Instead, how can we celebrate neurodiversity, lean into strengths, and address the real challenges that many autistic people have (stigma, bullying, lack of environmental supports, under-employment, mental health needs)? Let's flip the script from avoiding autism as a threat to appreciating autistic people for their gifts.

And for those of us who cherish autistic people amongst us, let's be sensitive to how sh*tty things are going to be with this horrible eugenics-lite rhetoric in their feeds and faces.

Let's play our cards right, and support and appreciate our autistic community ❤️ ♾️

There has been some media discussion recently (see below) about NASCs/Whaikaha no longer accepting diagnoses of autism via telehealth. After Whaihaka referred to the NZ Autism Guideline in confirming this policy, the Guideline was criticised as being "out of date" and "making no sense". To help clarify with some facts:

📣 The Autism Guideline has been updated every year since 2009 through the living guideline process.

📣 The living guideline process is funded by Government but is independent of it. Recommendations relate to best practice. The Guideline does not dictate policy but it can inform it.

📣 The Guideline does not explicitly refer to telehealth but recommends ( #1.2.2) that "a multidisciplinary team of health care practitioners experienced in autism should undertake diagnostic assessment of young people and adults suspected of being autistic".

📣 The Guideline hasn't been put forward as a topic of priority by the Living Guideline Group (LGG) expert advisory panel. Topic selection and prioritisation is led by strict criteria which is unashamedly research-led, and informed by autistic voices and stakeholders. Criteria includes that evidence has changed sufficiently to require a significant revision of a Recommendation.

📣 Telehealth is a well-accepted useful model for delivering supports. It has the potential to address inequities around rural access and cost, and meet personal preferences. However, diagnostic accuracy must not be compromised in the process.

📣 Assessments conducted solely by telehealth place limitations on observation. A private clinical psychologist says, “when a person is assessed via Zoom, it’s much harder to observe autistic characteristics because the diagnostician only sees the person's face and shoulders and opportunities for interactions are very limited. When I've conducted assessments solely by Zoom, I’ve found gaps in the collected data, rendering triangulation and diagnostic certainty more difficult”.

Paediatrician and co-Chair of the Living Guideline Group Dr Andrew Marshall says, “it is still possible to make a diagnosis of autism by telehealth… but it is much harder, the quality of the observations you can get is not as good, and so the case has to be very obvious in order to make a clear diagnosis. Shorter assessments, and ones based largely or solely on questionnaires, are particularly problematic”.

📣 The Guideline is consistent with the Australian Diagnostic Guideline's (2023) recently updated Recommendation ( #18) on this topic: "Telehealth may be used to complement in-person meetings, but should not be used as the sole medium throughout the assessment and diagnostic process". (Grade: Strong)

📣 As a Living Guideline, changes are made in the face of significant new evidence. As evidence emerges in this fast developing field, the LGG may decide an update on the role of telehealth in assessment is needed and prioritise it for review.

🎵 These comments are my own

www.pressreader.com

The latest update to the Autism Guideline has been published today. This supplementary paper includes a systematic review of research relating to a person’s s*x or gender in the presentation of autistic characteristics, the timing of diagnosis; and how they mask autistic characteristics.

Take home points:

** When considering the possibility of referral or diagnosis for autism, practitioners should be aware of the diversity of presentations of autism and consider the possibility of gender-based differences in autistic characteristics.

** In assessment for autism, individuals presenting characteristics should be compared with reference to those of non-autistic peers of the same gender and intellectual abilities.

** Masking of autistic characteristics can occur regardless of age or gender. Support goals should be consistent with creating an environment where autistic people can be safely and authentically autistic.

** When assessing characteristics for autism, clinicians and practitioners should be aware that diagnostic characteristics of autism may present differently to stereotypically male presentation, particularly for individuals who are (cisgender) female/girls/women, transgender, non-binary, and/or genderfluid.

You can access the full report here: https://www.whaikaha.govt.nz/about-us/programmes-strategies-and-studies/guidelines/nz-autism-guideline/supporting-materials -papers

New supplementary paper updates Aotearoa New Zealand Autism Guideline | Whaikaha - Ministry of Disabled People The Ministry of Disabled People - Whaikaha has published a new supplementary paper updating the Aotearoa New Zealand Autism Guideline: He Waka Huia Takiwātanga Rau.  

The announcement last week by Hon Louise Upston, Minister of Disability Issues (Whaikaha), and Minister of Social Development (MSD) of changes to Whaikaha – Ministry of Disabled People after a Review were a lot to take in.

Disability researcher and autistic Dr Nicolina Newcombe (through IHC) has prepared an excellent Easy-Read version summarising the decisions made.

Easy read versions are designed for people with learning/intellectual disabilities. However I also find them fantastic for everyone in clarifying the main issues free of political spin.

A very useful guide to the Minister Hon Louise Upton's announced changes to Whaikaha - Ministry of Disabled People last week.

Last week's announcement about disability support services moving from Whaikaha - Ministry of Disabled People to the Ministry of Social Development NZ has left many disabled people and their family/whānau anxious about what this means for them.

We've developed an Easy Read guide to explain more about the Government's decision: https://shorturl.at/1TzMi

Seen at rail station in Melbourne

"As a word, ‘neurodiversity’ describes the whole of humanity. But the neurodiversity movement is a political movement for people who want their human rights.”

- Judy Singer

I always knew that the term "neurodiversity" had been coined by Australian Judy Singer, but I didn't know much about her or that it was used back in the 1990's. This is an excellent article about her and her ground-breaking activism - what an amazing person! It's terrific that she is getting genuine recognition overseas, but sadly less so in her home country. I am sure this article will change that.

I particularly liked this bit of the article:

"...she alights on one of her frustrations about latter-day understanding of what neurodiversity means: the fact that it is sometimes used as a corporate buzzword, denoting the need to include different kinds of people in the workforce. This, she says, sounds reasonable, but it misses a lot of crucial points".

She writes, "I’m not here to make capitalism more efficient; I’m here to make it more humane".

Boom.

The mother of neurodiversity: how Judy Singer changed the world In 1997 she transformed the way we think about human difference – and provided a name for a burgeoning movement

I would encourage any people within the autistic community and autism community in Aotearoa NZ more widely to participate in this important survey about how best to serve the needs of autistic people/tāngata whaitakiwātanga.

How do we get autism support right in Aotearoa New Zealand?



We want to understand your experiences and opinions of current supports and what you think is needed for the future.

Have your say! Take part in an anonymous survey that will take up to 20 minutes for most people to complete.

The survey is open to autistic people, parents/carers, family/whānau, professionals, researchers, and policy makers.

You can go in the draw to win one of 100 Prezzy Cards valued at $25 each.

To find out more and to complete the survey online click here: https://www.surveymonkey.com/r/RGMMRLZ

Alternative survey options

You are welcome to have a support person help you complete the survey.

Paper copies and easy read versions of the survey are available.

You can also complete the survey with support from a member of the research team via a telephone, Zoom, or face-to-face interview.

Completing the survey in this way will mean that your responses will not be anonymous but will be confidential to the research team.

We will endeavour to support completion of the survey in another language upon request.

This research has been approved by the Te Herenga Waka—Victoria University of Wellington Human Ethics Committee (Application number: 30857)

To find out more about alternative survey options or if you have any questions you can contact the research team on: [email protected] or 021 190 6070.

A great article has just been published in New Zealand Doctor about the 3rd edition of the autism guideline. Thanks to the Living Guideline Group’s Co-Chair, Andrew Marshall, for preparing this, and thanks also to NZ Doctor for making it a free read.

World’s first ‘living guideline’ for autism should be a go-to resource This article describes a newly revised autism (takiwātanga) guideline, which presents best practice on how to support autistic people across the lifespan

Thrilled to hear from my dear friend Matt Frost today that he has received a Queen’s Service Medal (QSM) in the New Year’s Honours list today for his extraordinary service to autistic people and guideline work!!!!!

Congratulations Matt, a cause for celebration across the Autism and autistic community!