Prof Rosa Hoekstra
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rosahoekstra.bsky.social
Prof Rosa Hoekstra
@rosahoekstra.bsky.social
2.6K followers 810 following 160 posts
Professor of developmental disabilities @KingsIoPPN. Co-leads https://www.thesparkproject.net/, editor of @journalautism.bsky.social
Migrant. Loves London, loves travel
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rosahoekstra.bsky.social
Yesterday we said goodbye to lab member @jialingli.bsky.social who is moving back to China to take up a postdoc role. Jialing, you were an awesome PhD student and will be greatly missed in the GLADlab! London's loss is China's gain, I look forward to following all the fab things you will do next.
Members of the GLADlab studying global perspectives on autism, saying goodbye to Jialing Li (second left). Lab members are posing in front of the 'Hall of Phame', a notice board celebrating successful PhD completions in the Addison House Psychology department of King's College London.
October 14, 2025 at 9:16 AM
rosahoekstra.bsky.social
Completely agree. Can we take a moment to admire this banner though. 'Verdedig Nederland', in grammatically clumsy English?
Banner at today's far right immigration protest in the Netherlands, with the text 'defend Netherlands'. Photo by persbureau Marofer.nl
September 20, 2025 at 2:43 PM
rosahoekstra.bsky.social
Hello India and hello autism researchers, I will be in Delhi this week to speak at the #AOCCN2025 conference. I'll go straight from the airport to the autism pre conference workshop tomorrow afternoon, and will speak at the main conference on Saturday. Please come say hi! aoccn2025.in
Main page of the website of the Asian Oceanian congress of child neurology, held 16-21 September in New Delhi. Full details here: https://aoccn2025.in/
September 15, 2025 at 1:44 PM
rosahoekstra.bsky.social
One of my favourite things: koppie climbing
Walking in the dry veld towards a rocky koppie (hill) in the Brandberg mountain range Brandberg rock
August 21, 2025 at 2:16 PM
rosahoekstra.bsky.social
Thank you Sarah! It was a lovely day, you were missed!
Dr Eli and Prof Rosa after the IoPPN graduation ceremony
July 30, 2025 at 9:24 PM
rosahoekstra.bsky.social
Copied from @nihr.bsky.social from the other side: this was a nice event hosted by the Kenya High Commission where NIHR funded health projects in Kenya presented their research findings and heard from the Kenyan MoH about their priorities. A great opportunity for researchers to meet policy makers
"Research only realises its value when it is shared... so it informs policy, strengthens services and delivers real impacts for patients." - H.E. Catherine Karemu H.E. Catherine Karemu (front right) hosted NIHR and NIHR funded researchers at the Kenya High Commission in London Her Excellency H.E. Catherine Karemu hosting the event.
July 19, 2025 at 4:20 PM
rosahoekstra.bsky.social
Fellow humans, please stop driving cars with high bonnets. You don't look cool and you're more likely to kill others. www.transportenvironment.org/articles/eve...
Textiel grom executive summary of the report: Ever-higher: the rise of bonnet height, and the case to cap it June 11, 2025 Report calls on European law-makers to cap bonnet height by 2035, recommending an 85 cm limit for further study Study: Ever-higher - the dangerous rise of bonnet height, and the case to cap it Vehicles with higher bonnets are more dangerous in crashes - but bonnet height continues to rise. Average bonnet height in newly-sold cars is increasing by half a centimetre (0.5 cm) a year, reaching 83.8 cm in 2024, up from 76.9 cm in 2010, according to T&E’s analysis of new registrations in the EU, the UK and Norway. Neither EU nor national laws limit the ongoing rise in bonnet height. Higher bonnets increase collision severity and impair vision In crashes, high-bonneted SUVs and pick-up trucks typically strike adult pedestrians above the centre of gravity, often first hitting vital organs in the body’s core, with a higher likelihood of knocking them forward and down, and a greater risk of driving over them. On the other hand, low bonnets tend to hit pedestrians’ legs, giving them greater chances of falling towards the vehicle, or of being deflected. High bonnets also reduce drivers’ vision of other road users - and can entirely compromise it. Drivers behind high bonnets can fail to see children in front of them, for example, when leaving a driveway or parking space. At junctions, compromised vision increases crashes, particularly when turning.
June 11, 2025 at 4:29 PM
rosahoekstra.bsky.social
This review can inform future research, especially family-focused intervention research, as well as clinical practice. Some ideas are presented in this table.

And here again the link to the paper: link.springer.com/article/10.1... Congrats Jialing, it was a pleasure to supervise you in this work!
Table presenting Recommendations for future research and clinical directions
May 20, 2025 at 2:09 PM
rosahoekstra.bsky.social
Individual, family and family interaction characteristics can affect how much support is given and if that support is perceived as helpful; cultural influences have been understudied but may also play a role.
Figure showing the main themes and subthemes described in the systematic review
May 20, 2025 at 2:09 PM
rosahoekstra.bsky.social
Misunderstandings about autism and negative attitudes can lead to lack of support or extended relatives providing support perceived as unhelpful
“Some of the people from my family were understanding. Others were not. They were telling us to get rid of him. To get rid of him! [They said], ‘Why are you taking care of him?’ That is how some people think. When he got sick, they kept telling us, ‘Why are you even spending money on him?’.” (Parent; Dababnah & Parish, 2013, p.1674) “I am excluded by my family including my mother… Their problem is embarrassment. They told me not to bring my child to their house during daytime [when people can see her] and they told me to bring her to their house during the night-time [so that nobody can see her]. But only Satan moves at dark. We, children of God, will move in the daytime. They are worried about their dignity.” (Parent; Tekola et al., 2020, p. 4)
May 20, 2025 at 2:09 PM
rosahoekstra.bsky.social
Grandparents, aunts and uncles are often highly involved and provide emotional, instrumental, financial or informational support
“My mother was so good, when I was having very hard nights I would ring her and she would say bring him up… So I’ve been very grateful to my Mum, she has been sick her whole life and she shouldn’t be here at all, she has been and unbelievable amount of strength and support to me she is the main person.” (Parent; Prendeville & Kinsella, 2019, p. 742) “I have no idea… how her ultimate outcome is going to be. I don’t know how far she can go or how fast. All I am doing is watching this beautiful flower that just keeps opening and opening ... She doesn’t hit the milestone at the same point on the timeline as her siblings. But she hits them. ... And she goes on from there towards the next one” (Grandparents; Yang et al., 2018, p. 369)
May 20, 2025 at 2:09 PM
rosahoekstra.bsky.social
New paper🚨, by the wonderful @jialingli.bsky.social!
Extended relatives play an important role in caring for autistic people, but this is often overlooked in policy and intervention research. Our systematic review of qualitative studies synthesises findings from 42 studies doi.org/10.1007/s105...
Abstract of the paper The Role of Extended Family Members in the Lives of Autistic Individuals and Their Parents: A Systematic Review and Meta-Synthesis: Extended family members play an important role in meeting the care needs of autistic individuals, yet family support policies and practices often overlook this role. We aimed to synthesise qualitative research on the role played by extended family members in the lives of autistic individuals and their parents and identify cultural patterns. We searched eight databases and selected relevant studies through a two-stage screening process. We synthesised the results and discussions described in the selected studies using template analysis. The review included 42 studies (40 qualitative; 2 mixed methods), reporting on 1048 parents and 2140 grandparents. While aunts, uncles, and cousins were not direct participants, their roles were described in participants’ narratives. Three main themes were developed: (1) types of support from extended family members, including emotional, financial, instrumental, and informational support; (2) unhelpful or lack of support from extended family members, including misunderstanding about autism, absence of support with caregiving, and negative attitudes and discriminatory behaviours against autistic individuals as well as their parents; (3) factors influencing the role of extended family members, including individuals, family unit, family interaction characteristics, and a journey towards acceptance and cultural influences. Novel findings on the influence of culture suggested in cultures highly valuing family interdependence, extended relatives play a more prominent support role, yet the emphasis on family reputation might hinder the acceptance of autism by extended relatives. Based on a family systems approach, we recommend priorities for intervention development and clinical practice to support the effective involvement of extended family members.
May 20, 2025 at 2:09 PM
rosahoekstra.bsky.social
I know we're getting to the tail end of #INSAR2025 but please consider holding out until the end, to attend this session 2-4pm. You are in for a treat, with trial results presentations from @kathyleadbitter.bsky.social, Meera, Gauri Divan and Martine Habra
Opening slide of the introduction to a panel presented at the INSAR conference, on Trials of if caregiver-focused interventions in diverse settings
May 3, 2025 at 5:58 PM
rosahoekstra.bsky.social
It's 6.30pm in Seattle and the #INSAR2025 poster session is still buzzing! So cool to see such engagement 😍. Come find @jialingli.bsky.social at poster 37 presenting on stigma and support from extended relatives for autistic children in China
Poster hall at INSAR showing lots of people walking around or looking at posters PhD student Jialing Li presenting her poster
May 3, 2025 at 1:42 AM
rosahoekstra.bsky.social
Dr Alexia Rattazzi accepts the #INSAR2025 cultural diversity award on behalf of the REAL network, a network that has been extremely successful in building autism research capacity in Latin America on a shoestring budget. Congrats REAL team!
Dr Alexia Rattazzi accepting the INSAR cultural diversity award
May 2, 2025 at 3:47 PM
rosahoekstra.bsky.social
Come find @tsegereda.bsky.social present her poster at #INSAR2025! She is presenting on the accuracy of a proactive case finding approach aiming to increase identification of children with developmental disabilities and encourage help seeking. See www.thesparkproject.net for more info
Dr Tsegereda presenting her poster at INSAR 2025
May 2, 2025 at 1:23 AM
rosahoekstra.bsky.social
Wowsers what a powerful rallying cry to stand up for science by Dr Andy Shih after accepting the #INSAR2025 autism research advocacy award
Dr Andy Shih giving his acceptance speech after winning the INSAR 2025 autism research advocacy award
May 2, 2025 at 12:28 AM
rosahoekstra.bsky.social
Incoming INSAR president Dr Brian Boyd kicks off #INSAR2025 by highlighting the consequences of US funding cuts for autism research.

ECRs: I'm not going to pretend to have any clear solutions. But if you'd find it helpful to have a chat, come find me at INSAR

www.thetransmitter.org/spectrum/fed...
Federal funding cuts imperil next generation of autism researchers As the International Society for Autism Research’s annual meeting begins, its next president reflects on a brewing crisis. By Brian Boyd According to the 2019 to 2020 report from the Interagency Autism Coordinating Committee, nearly 83 percent of autism research funding comes from federal sources. Furthermore, many U.S. federal agencies fund autism research abroad; therefore, funding cuts will have global consequences for both early-career and established researchers. Those figures may seem daunting, but the small steps we can take give me hope. First, I encourage established researchers to create space for open, transparent conversations with early-career mentees about the personal and professional impacts of the current funding climate. It’s essential to recognize that researchers from marginalized backgrounds and those working with underserved communities may be disproportionately affected by these challenges. I’m looking forward to some of these conversations happening at this year’s INSAR annual meeting, the preeminent gathering of autism researchers from around the world and at all stages of their careers.
April 30, 2025 at 2:23 PM
rosahoekstra.bsky.social
Hello Seattle, hello #INSAR2025!
Looking forward to four days of discussing autism science with the global autism research community
Downtown Seattle
April 30, 2025 at 1:57 PM
rosahoekstra.bsky.social
212,964 people in the UK are waiting for an autism assessment; some wait years, this affects their mental health. @autistica.org.uk produced a report to guide who to accept and prioritise for assessment: www.autistica.org.uk/our-research...; a key concluding paragraph is below. A quick🧵 #AutRes 1/
Picture shows paragraph from the Conclusion section of the Autistica report. The text reads as follows: "Services should use tools (or a combination of tools) supported by rigorous research evidence wherever possible, although this report identified substantial gaps in the evidence base. In particular, the use of standardised tools in triage of referrals has rarely been considered, compared to their use in screening. There are also gaps in the evidence related to exploring the applicability of tools across subgroups (for example, based on patient demographics, or clinical need) and the ability of tools to identify alternative or co-occurring conditions. More studies are needed to robustly evaluate tools against the criteria in realistic settings, specifically the context of current NHS autism assessment pathways."
April 23, 2025 at 11:22 AM
rosahoekstra.bsky.social
Q: What do you get when you take elements of a speakeasy, craft beer brewery and barista café, but grounded in proud Ethiopian tradition?
A: A coffee house serving all types of Ethiopian coffee, served the traditional way, or 🍸 style cold brew. What a lovely afternoon in Addis.
Coffee served traditional Ethiopian style Dr Mekdes enjoying a delicious (alcohol free) cold brew served in beautiful bottle and cocktail glasses Picture of the tasting floor with samples of coffee from all coffee growing areas of Ethiopia
April 5, 2025 at 4:56 PM
rosahoekstra.bsky.social
On World Autism Acceptance Day my Ethiopian colleagues update our project advisory committee on SPARK project findings and seek their feedback. This is such an engaged advisory group, working every day to support kids with developmental disabilities ❤️ #AutRes
#WorldAutismAwarenessDay
SPARK Ethiopia project advisory committee meeting on Autism Acceptance Day Dr Mekdes presents findings of the evaluation of the CIDD tool that aims to improve community identification of developmental disabilities and encourage help seeking. SPARK Ethiopia country co-PI Dr Fikirte leads an engaged discussion about SPARK research findings and implications for policy and practice Ms Liya Tesfaye from Joy Center Ethiopia and co-developer and facilitator of a teacher training programme to improve access to inclusive education for children with developmental disabilities shares findings from a pilot of the programme, tested in 4 schools in Addis Ababa
April 2, 2025 at 9:18 AM
rosahoekstra.bsky.social
INSAR members, please do vote to help decide who will succeed me as Secretary! Voting closes on 21 Feb. View the slate and nominee bios here: www.autism-insar.org/page/BODNom; check your email for the voting link #AutRes
February 19, 2025 at 9:18 AM
rosahoekstra.bsky.social
🚨New publication alert:
In this editorial my PhD students and I reflect on our challenges and relative successes in incorporating community involvement in our autism research.
The editorial is openly available here: journals.sagepub.com/doi/full/10....
Screenshot of the title of the editorial, published in the journal Autism. The editorial title is: "Community involvement in PhD students’ autism research projects: Challenges and opportunities" Paragraph setting out the main challenges relating to community involvement in PhD student projects, as follows: Community involvement is not without challenge and difficulties are commonly reported in recruiting representatives, building meaningful connections, maintaining engagement, funding community partners and implementing their recommendations. These challenges can be more pronounced in PhD student projects. The primary focus of a PhD is to independently complete a specific, often narrowly defined research project that contributes new knowledge to the field, within a specific timeframe and often with limited research funding. The independence requirement of PhD work may seem at odds with the requirements of active collaboration with community members, making it hard to strike a balance between leading the project and allowing collaborators to feel ownership of it. The limited timeline, of just three full-time years in some countries, can make it difficult for PhD students to ensure meaningful community engagement and to follow community advisors’ suggestions within the narrow scope and timeframe. Without funding, PhD students may also find it difficult to conduct community-engaged research that pays people appropriately for their contributions and time (Pickard et al., 2022). Finally, the early career stage of PhDs means that connections with community experts are often formed during, rather than prior to, the PhD, limiting the scope for early engagement.
December 2, 2024 at 5:59 PM
rosahoekstra.bsky.social
17 years after my own viva defence I returned to the VU university, this time as co-supervisor of the fabulous Fangyuan Liu who defended her PhD thesis, a cross cultural study of autism in NL vs China. What a special day, ended with an amazing Chinese hotpot
Picture of freshly minted Dr Liu and het supervisors Chongying Wang, Anke Scheeren, Sander Begeer & Rosa Hoekstra Chinese hotpot dinner, wearing aprons to limit the damage of clumsy chopstick dipping
November 5, 2024 at 9:10 AM