Projects currently recruiting families from ASD-UK:
University College London
ASD-UK is supporting Jo Saul and Prof Courtenay Norbury to recruit children with ASD aged 2 to 5 years who have limited expressive language (less than 20 words).
Why is the research being done?
Language development in autism is highly variable, and language skills are an important predictor of overall outcome. Many studies are focused on trying to understand causes of this variation, as it may help us formulate better interventions. This project investigates early speech production development in autism, and how it fits in with overall language development.
What will the researchers be doing?
Participation involves answering questionnaires, being videoed playing with your child and your child playing some simple games with an experimenter. There would be 5 sessions spread over 16 months, each taking place either in your own home or our child-friendly lab near Kings Cross Station, London (travel expenses reimbursed).
Additionally, half of the families will be chosen at random to participate in a 12-week app-based speech intervention using a smart phone or tablet. All families may continue any additional therapy as usual during this study.
Eligible participants must have English as the main language at home and no additional sensory impairments, known genetic disorders or epilepsy.
Who is funding the research?
Jo Saul has been awarded an ESRC studentship to undertake a PhD in Language and Cognition at UCL and this is her PhD project, supervised by Professor Courtenay Norbury.
Contact details
Interested participants should contact Jo Saul on jo.saul.14@ucl.ac.uk or 07786165617.
University of York
ASD-UK is supporting Victoria Knowland to recruit infants who are under 2 years old and have an older sibling on the autism spectrum, in the York and London areas.
Why is the research being done?
The purpose of the study is to track the early sleep patterns of children who have an older sibling on the autism spectrum. Many children on the autism spectrum have chronic sleep difficulties, including trouble falling asleep and trouble staying asleep. However, it’s not yet known how early those difficult sleep patterns develop, or indeed if sleep is involved somehow in the emergence of symptoms of autism. Working with the siblings of children with diagnoses can be very informative as they have a higher chance of going on to show symptoms, though the majority do not. By measuring changes in sleep patterns over the second year of life, the researchers hope to understand more about how sleep relates to early development.
What will the researchers be doing?
The researchers will give families a MonBaby button (a commercially available device that clips onto your baby’s pyjamas to measure their movement) and ask families to use this for five consecutive nights each month for five months, or as long as they can manage, as well as filling in a short sleep diary. At the start and end of the period of sleep monitoring, or when your infant turns two, the researchers will complete an assessment of your infant’s development, which will involve a short play session with them, and ask parents to fill in some questionnaires.
Who is funding the research?
This project is funded by the White Rose Collaboration Fund.
Contact details
For more information about the study or if you would like to take part, please contact Victoria Knowland (victoria.knowland@york.ac.uk).
Leeds and York Partnership NHS Foundation Trust
ASD-UK is supporting Helen Phillips and Prof Barry Wright to recruit both deaf and hearing children and young people with autism aged 2 to 18 years old, in Yorkshire, London, the East Midlands and North East.
Why is the research being done?
A diagnosis for a child/young person with ASD is crucial to ensure that the necessary support can be given to the child/young person and their family. Unfortunately, existing Autism assessments are not designed for or accessible to deaf children and young people, which can lead to a delayed or incorrect diagnosis. This causes stress for the family and delays appropriate support.
The research team have adapted three of the existing Autism assessment tools so that they can be used with deaf children and young people. They hope that these new assessments will make getting a diagnosis and accessing help and support services easier for families of children with autism who are also deaf.
As well as recruting deaf children with autism, the research team are asking for the help of families of hearing children with autism so that they can see if these adapted assessments work and to explore the differences seen in strengths, difficulties and symptoms between hearing children and deaf children with autism.
What will the researchers be doing?
The researchers will ask parents/carers to fill in some questionnaires. They will also ask parents/carers and your child some questions and carry out an ADOS-2 assessment at a venue near your home.
Who is funding the research?
This research is supported by the Medical Research Council (MRC) through the Biomedical Catalyst: Developmental Pathway Funding Scheme.
Contact details
For more information about the study or if you would like to take part, please contact Helen Phillips (Research Trial Coordinator)
University of York
ASD-UK is supporting Victoria Knowland to recruit children and young people with autism aged from 8 to12 years old in the York, London and East Midlands areas for this study.
Why is the research being done?
On average, humans spend a third of their lives asleep. Amazingly, no one has yet been able to pin down exactly why; but if sleep isn’t somehow vital then, as sleep pioneer Allan Rechtschaffen famously said, it’s the biggest mistake evolution ever made! Researchers at the Sleep Learning and Memory lab are interested in the benefits that sleep has been shown to have for learning. They believe that sleep may hold some important answers as to why some children struggle to learn new information while others take it in their stride. It may be that the relationship between sleep and learning might not be the same for all children.
Sleep difficulties are common in children with developmental disorders such as Autism Spectrum Disorders (ASD) and language learning impairments. Is it possible then that sleep issues contribute to the learning difficulties that these individuals face? This research project specifically sets out to explore the link between sleep and language development in children with ASD and language learning difficulties compared with their typically developing peers.
What will the researchers be doing?
The researchers will use a method called polysomnography (PSG), which literally means ‘many-sleep-writing’, to monitor children’s sleep. They will take measurements of brain activity while children sleep in their own homes using sensors placed on the head (electroencephalography; EEG) and movement using an actigraphy watch, somewhat like a Fitbit. By monitoring brain activity over night they can trace the stages of sleep we all go through, from light sleep to deep sleep and Rapid Eye Movement sleep, when we are most likely to dream.
Given that language measures are one of the strongest predictors of academic, social and emotional outcomes, being able to explain why children differ in their language development is crucial. This is true both for theoretically understanding the process of language acquisition, as well as developing the best interventions to optimise children’s language development. If we can understand the factors that contribute to language problems then we can also improve support for individuals with such problems, and raise awareness of the importance of improving the quality of children’s sleep.
Who is funding the research?
SleepSmart is funded by the Economic and Social Research Council (ESRC).
Contact details
For more information about the study or if you would like to take part, please contact Victoria Knowland (sleepsmart@york.ac.uk).
Centre for Brain and Cognitive Development, Birkbeck College, University of London
ASD-UK is supporting Jennifer Glennon and Prof Michael Thomas to recruit children and young people with moderate to severe autism aged from 6 to 10 years in the London area for this study.
Why is the research being done?
Children with autism experience the world in a uniquely different way. Yet the exact nature of this difference remains unknown. The researchers at the Centre for Brain and Cognitive Development are endeavouring to see the world through the eyes of the child with autism. They hope that insights gained will inform autism support services and ultimately improve quality of life for children with autism.
What will the researchers be doing?
By using eye tracking and electroencephalography (EEG) technologies while children observe a short series of images and videos, the researchers wish to learn more about how children with autism experience the world. The researchers will also ask parents/carers to complete questionnaires about their child's behaviour.
Who is funding the research?
This research is funded by the Economic and Social Research Council (ESRC).
Contact details
For more information about the study or if you would like to take part, please contact Jennifer Glennon (jglenn01@mail.bbk.ac.uk).
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Projects that have recently completed recruitment:
Durham University
ASD-UK supported Miss Emily Grew, Dr Debbie Riby and Dr Mary Hanley to recruit children and young people with an Autism Spectrum Disorder aged from 6 to 16 years in the North East of England for this study.
Why is the research being done?
Understanding how to support children to do their best at school is a vital part of education. To discover the best way to do this, the researchers at Durham University would first like to understand the skills and behaviours that are related to academic success. For example, children who have good attention skills may achieve higher grades at school compared to those who have poor attention skills. Previous research has suggested that this may be true for typically developing children, however this relationship is less understood for children with an Autism Spectrum Disorder (ASD).
It is known that children with an ASD can experience problems that may impact on their school experience, which may in turn influence how well they do at school. The researchers would like to investigate whether different abilities and behaviours (such as attention, verbal ability, IQ, anxiety, social behaviour, sensory sensitivity) may influence how well children perform at school. They are interested in this relationship for children both with and without an ASD.
What will the researchers be doing?
The study will involve completing five assessments of cognitive ability and academic achievement with each child. The researchers will also ask each child’s parent or guardian to complete four questionnaires relating to the child’s social behaviour, symptoms of anxiety, and their sensory experiences. To take part, children should have a minimum language level of being able to use simple phrases.
Who is funding the research?
The research is funded by the Economic and Social Research Council as part of a North East Doctoral Training Centre Studentship Award, awarded to Emily Grew, who is studying for her PhD.
Contact details
For more information about the study, please contact Emily Grew (e.e.grew@durham.ac.uk).
University of Bedfordshire
ASD-UK supported Dr Chris Papadopoulos to recruit families from across the UK to complete an online survey.
Why is the research being done?
Dr Chris Papadopoulos and team at the University of Bedfordshire are looking at the impact of “stigma” on the carers of children on the autism spectrum.
In this study, the term “stigma” is used to describe any negative attitudes or behaviour of other people or society in general towards someone associated with autism (such as the parent of a child with ASD), and also when a person thinks negatively about themselves.
The research team at the University of Bedfordshire are trying to design a course of sessions that caregivers of children with ASD could attend to learn about ‘protecting themselves’ from potential stigma. To help the researchers plan this course, they would like to hear about personal experiences of stigma from families, and your views about how to make the planned course successful and effective.
The research is funded by the autism research charity Autistica.
Contact Details
For more information about the study, please contact Chris Papadopoulos (chris.papadopoulos@beds.ac.uk).