News archive

Congratulations to our Prudential RideLondon-Surrey cyclists!

Chloe Ridgwell and Darina Donohoe embraced the ultimate cycling challenge on Sunday 31st July, pedalling for 100 miles to raise money for the Autism Research Trust.

Celebrating the legacy for cycling created by the London 2012 Olympic and Paralympic Games, Prudential RideLondon-Surrey 100 started at 6am in Queen Elizabeth Olympic Park, then followed a 100-mile route on closed roads through the capital and into Surrey’s stunning countryside. With leg-testing climbs and a route made famous by the world’s best cyclists at the London 2012 Olympics, it is a truly spectacular event for all involved. The Prudential RideLondon-Surrey 100 finished on The Mall in central London, shortly before 150 professional cyclists raced in the Prudential RideLondon-Surrey Classic on a similar route.

Thank you again to Chloe Ridgwell and Darina Donohoe who have already raised nearly £1000 for the Autism Research Trust!

If you would like to donate, please visit www.justgiving.com/chloeanddarina

 

 

The Battle of Stamford Bridge, Gala Boxing Night

In celebration of the Tercentenery of the Royal Regiment of Artillery and the Corps of Royal Engineers, a gala boxing night was held on Wednesday 6th July at Stamford Bridge in South West London.

The momentous occasion included an exciting boxing match, four-course dinner and fantastic charity auction. Over 400 guests attended.

photo 4              photo 2

ART was delighted to be one of the two charities selected, to whom the proceeds of the evening will be kindly donated. We would like to thank ART ambassador, Jools Holland OBE DL, for introducing us to the Royal Regiment of Artillery and the Corps of Royal Engineers.

Thank you to everyone who was involved and made the night such a success.

 

 

‘Asperger Syndrome in the Workplace: A Different Way of Thinking’

Panel discussion, Norton Rose Fulbright LLP on Monday 13th June

We are grateful to Norton Rose Fulbright LLP for hosting an inspiring panel discussion, which highlighted both the challenges and benefits of the corporate world working in conjunction with people with Asperger Syndrome (AS), a form of autism characterised by difficulties in social interaction and social communication.

The occasion marked a collaboration between Aspierations, an advocate group for people with AS, created to encourage and facilitate their employment and career success in the corporate world, and the Autism Research Trust.

A startling number of people with Asperger Syndrome are unemployed and we need to find them jobs where they feel valued and supported. So the aim of the evening was to create an insightful and positive discussion promoting new thinking by corporates when it comes to recruiting, nurturing and supporting employees with AS.

Autism can confer a significant advantage in STEM fields (science, technology, engineering and mathematics) and if these skills are recognised, all parties can benefit.

Among topics covered was about how a corporation can encourage people with AS and find ways for these individuals to display their strengths and talents, not only in the interview process but throughout their careers.

Since a significant percentage of the guests were parents of autistic children, the devotion to this subject was all the more palpable. The engaging round of questions at the end proved this is an issue we need to get right; all our lives and careers will be enriched if we can commit to a more open and diverse workforce.

On the panel was Professor Simon Baron-Cohen, Director of the Autism Research Centre at Cambridge University and trustee of the Autism Research Trust; Laurel Herman, founder of Aspierations together with its chairman Gabriel Herman; and Andy Boucher from PwC providing an employer’s perspective.

 

 

Great Manchester Run with World champion boxer Anthony Crolla and his ‘Army’

World champion boxer Anthony Crolla and his ‘Army’ of 12 enjoyed the Great Manchester Run on 22nd May 2016, raising money for charities close to their hearts.

Amateur boxer Benjamin Uzokwe, 19, from Manchester (pictured above on the right, and below with Crolla) was one of the lucky people picked by Crolla for this challenge. He chose to run for the Autism Research Trust, in support of his sister who is autistic.

Ben - Crollas Army

Ben commented ‘I would like to embrace this opportunity to raise money for your charity, as I  have an eight-year old autistic sister and understand how hard it is to get a diagnosis.’

Crolla took the event very seriously and got his team together for a training session before the race and was a source of encouragement throughout. On race day the team wore branded Crolla’s Army running shirts, and were joined by Anthony at the start and finish line of the event for last minute pep-talks.

The day saw over 40,000 runners challenging themselves over 10km through the closed city centre streets.

Moston-born star Crolla, 29, who was crowned WBA lightweight champion at Manchester Arena, is a regular runner. He used running as part of as his recovery after he was left with a fractured skull and broken ankle by burglars he apprehended. The 12-member team was inspired by the number of rounds of a professional boxing bout.

If you would like to contribute to Ben’s online fundraising page, please visit: https://www.justgiving.com/Ben-Uzokwe

 

IMFAR, May 2016

Researchers from the Autism Research Centre travelled to Baltimore to attend the most important meeting of autism researchers, the International Meeting for Autism Research (IMFAR). 

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Researchers have the opportunity to present their latest research, and the posters that they produced for the meeting are below. 

ART also congratulate Professor Simon Baron-Cohen on his appointment as President-Elect of the International Society for Autism Research (INSAR), the scientific and professional organization devoted to advancing knowledge about autism spectrum conditions.  INSAR hosts IMFAR every year.

Positive and negative experiences of autistic mothers.

This project explores the experiences and opnions of autistic mothers in a variety of areas including pregnancy, self perception of parenting strengths, social experiences of motherhood and communication and interactions with professionals and social services.

Is bioavailable testosterone predictive of autistic traits in men and women with and without autism?

Fetal testosterone levels predict individual differences in autistic traits, and behaviours related to autism.  It is not yet known if testosterone levels in adults are related to autistic traits.  This study includes sex-specific analysis.

Atypical language-related asymmetry stratifies male individuals with autism with and without language delay.

Cerebral lateralisation is a fundamental feature of brain organisation and refers to the fact that the two cerebral hemispheres differ in structure and function from each other.  This study compares individuals with ASC with and without language delay on different measures of laterality including handedness and cortical auditory and language asymmetry.

Are mothers of children with autism more likely to have studied a STEM degree? A study of 2,000 women.

It is known that fathers and grandfathers of children with autism are more likely to work in STEM fields and that there are higher rates of autism in geographical regions that have higher rates of people working STEM fields.  This study investigates the degrees that mothers of children with autism have studied, prior to having their child.

 

 

Meet the Researchers

Profile of Jan Freyberg, who on completion of his PhD at the Autism Research Centre, has now  joined the Institute of Psychiatry, Psychology and Neuroscience at King’s College London.

Jan Freyberg

We hear about Jan’s career in autism research and how it all started.

  • How long have you been a researcher at the Autism Research Centre (ARC)?

I started working in the ARC as an undergraduate in 2011, and then joined the ARC full time as a PhD student in 2012. I finished that in 2016, after which I joined the Institute of Psychiatry, Psychology and Neuroscience at King’s College London. I still work with researchers from the ARC, however.

  • What influenced your decision to work in autism research and specifically at the ARC?

Studying as an undergraduate in Cambridge, I had lectures by Simon Baron-Cohen in my experimental psychology course. Autism got my scientific curiosity, and I joined the lab to work on what I thought was a fascinating research topic.

  • Can you tell us about the projects you’re currently working on?

I study visual perception in autism. Many psychiatric conditions, including autism, feature atypical sensory processing, which can be caused by the same issues in the brain that are causing other symptoms. By studying how people see the world, I hope to find out more about fundamental brain mechanisms in autism. Using vision science to study these conditions also has the benefit of being non-invasive and quick: participants can take part in stress-free experiments and still help us learn a lot about the brain in autism.

  • What do you find most challenging about your work?

One of the biggest challenges in my work is understanding how brain circuits – on extremely small scales – can produce behaviour. Even though we understand a lot about what different areas of the brain do, it’s still difficult to conceptualise how changes within those structures then go on to produce our perception of the world. But really, this is what we need to understand: changes in the brain in autism are subtle, and so it can be hard to make the link between the small scales and large scales.

  • What do you think will change in autism research over the next five years?

I think a deeper understanding of heterogeneity of autism will really change how autism is understood, treated, and diagnosed. It’s well known that autism is heterogeneous, but what is much less well known is what the biological causes of this might be. Once we have a better understanding of the myriad of different groups within the autism spectrum, research will be able to be much more focused.

  • If you were offered a large donation from ART, what would be your dream research project?

I would love to conduct a large research study that encompasses a broad range of people on the autism spectrum. Doing so requires a lot of manpower: finding the participants, running the testing, and analysing the results. But it would also substantially improve our understanding of the biology behind sensory processing, and different subgrouping of the autism spectrum. It would also allow us to access some of the groups less represented in most autism research: the people with low-functioning autism, for whom it is difficult to get enrolled in research studies at the moment.

  • Can you tell us about some of the people you’ve met while working with the ARC?

The first people I met at the ARC were my PhD supervisors, Simon Baron-Cohen and Caroline Robertson. They helped me an immense amount with my PhD, safely guided me through my examinations, and in general provided a great deal of support. But I also met a really wide range of other researchers at the ARC. Since the Centre studies so many aspects of autism, it’s great to meet people working on something completely different from myself – perhaps the genetics of autism, or how autism development works in early life.

  • What do you do when you’re not working?

I really like travelling and seeing the world, so I try to do as much of that as I can! I go on hiking holidays a lot, but I also really love going to new cities and exploring their history.

  • What would we be surprised to know about you?

I originally enrolled at University to do Chemistry, so it was really quite lucky that they allowed me to change to Neuroscience – I don’t think I would have enjoyed being a Chemist as much as I enjoy studying the brain.

 

Profile of Varun Warrier, PhD student at the Autism Research Centre

Varun Warrier

We hear about the projects Varun is working on and what he thinks will change in autism research over the next five years.

  • How long have you been a researcher at the Autism Research Centre (ARC)?

I’ve been working with Prof. Simon Baron-Cohen for three years now. I was first a research intern and then transitioned to an MPhil student. I’m now completing the first year of my PhD at the Autism Research Centre.

  • What influenced your decision to work in autism research and specifically at the ARC?

I first came to hear of work conducted at the Autism Research Centre during my undergraduate research project. I was working on unravelling the genetics of stuttering, and two of the genes that we were investigating, FOXP2 and CNTNAP2, had been implicated in autism. Subsequent research led me to Simon’s work on autism.

  • Can you tell us about the projects you’re currently working on?

I’m working to understand the genetic architecture of autism and a few psychological traits related to autism such as empathy, theory of mind, and systemizing ability using a combination of different approaches.

To expedite the identification of genes involved in autism, we are performing whole genome sequencing of highly informative families i.e. families where three or more individuals have an autism diagnosis. In parallel, we are also investigating the role of common genetic variations, which are changes in the human genome that many of us carry, in psychological traits to identify how they influence autism and other psychiatric conditions.

  • What do you find most challenging about your work?

I think what makes what I do both challenging and interesting is the constant turnover in technology and ideas. Autism and human genetics are both fields with tremendous amount of interest. This means that new methods and results are published every week. At times it’s difficult to keep up with all the research out there. But equally, it is very exciting to apply some of the latest methods to answer our research questions.

  • What do you think will change in autism research over the next five years?

As far as genetics is concerned, I think we will have a better understanding of how changes in the genome contribute to autism. We already have an inkling of some of the broader questions. We know that parental age, especially paternal age, can greatly increase the risk for autism; that autism with and without intellectual disability may have very different genetic profiles; that females have a higher genetic protective threshold for autism than males. With large, well powered cohorts, we have been able to identify a few tens of genes implicated in autism. I suspect that in the next 5 years we will be able to identify a significant fraction of the genes implicated in autism, and with that, the genetic pathways implicated in autism.

  • If you were offered a large donation from ART, what would be your dream research project?

The role of common genetic variants in autism is still an area that requires a great deal of investigation. The challenge is in developing a large cohort of individuals, with tens of thousands of individuals to power the statistical analysis that is required. It has been successful in other conditions such as schizophrenia and lipid biology. We know that common variants together contribute to a large proportion of the total variation in autism, but we still do not have a large enough sample size to answer how they do that. Further, understanding the role of common variants will help us interpret the role of rare variants better.

  • Can you tell us about some of the people you’ve met while working with the ARC?

The great thing about the Autism Research Centre is that you meet so many people working on different areas in autism. I work on the genetics of autism, and share my office with researchers working on neuroimaging and visual perception in autism. This increases the potential for cross-disciplinary collaborative work.

The other incredible aspect of working at the ARC is meeting the research volunteers. We have a large database of individuals who have volunteered to help with research at the ARC, and a part of my research project involves collecting biological samples and data from individuals. Many of the volunteers have an autism diagnosis and very often, interacting with these individuals shapes the research questions I hope to ask.

  • What do you do when you’re not working?

I really enjoy being outdoors a lot. So I try to maximize my time outdoors when not on my computer. I like hiking, cycling, kayaking and plan my holidays around getting as much sun as possible.

  • What would we be surprised to know about you?

Ironically, when I did biology in high school, genetics was the subject I liked the least. It was too abstract, and required way too much maths for my liking. All this changed during my undergraduate programme, when I sat through a series of lectures on the genetic cascade that determines sex in the fruit fly. I was hooked, and have never looked back.

 

Profile on Florina Uzefovsky, a visiting fellow at the Autism Research CentreFlorina pic

  How long have you been a researcher at the Autism Research Centre (ARC)?

I am finishing my second year as a visiting fellow at the ARC. I will soon be leaving to go back to Israel where I will be working at the Ben Gurion University and setting up a new lab that will focus on empathy and autism, from developmental and biological perspectives.

  What influenced your decision to work in autism research and specifically at the ARC?

My previous research focused on empathy in typically developing infants, children and adults. I am particularly interested in understanding the genetic and biological basis of empathy, and I have been focusing on elements of the oxytocin-vasopressin-dopamine system, which controls social behaviour in the brain. While focusing on ‘typical’ development I was also always interested in the different developmental trajectories that empathy can take in other populations, such as in autism. I am particularly interested in the differentiation between emotional (sharing an emotion with another) and cognitive (recognizing an emotion in another) aspects of empathy, and how these develop differently in different populations. 

When I was considering where and with whom I would like to work next, my first choice was to work with Professor Simon Baron-Cohen at the ARC. The ARC is a world-leading research centre, with an amazing breadth of research projects, from intervention, to policy, to biology and genetics. Moreover, Simon Baron-Cohen’s ability to synthesise very complex and distinct research areas into coherent theories with immense impact has made the ARC even more appealing to me. 

  Can you tell us about the projects you’re currently working on?

The main project I am working on is aimed at better understanding the heterogeneity in the presentation of autism. To do so, I am looking at genes coding for the receptors of oxytocin and vasopressin in relation to brain structure and function (a method termed imaging genetics). By doing so I hope to be able to define subgroups with a more homogenous presentation of autism and therefore to better understand the biological basis of autism, from genes to brain.

In addition, I am involved in a project aimed at understanding the genetic basis of autism and related psychological traits, such as empathy and systemizing, by investigating genetic variants that are commonly found in the population, and may be at the basis of the empirical findings that autistic traits are normally distributed in the entire population.  

   What do you find most challenging about your work?

Have you heard the story about the blind scientists trying to figure out what an elephant is? One is touching the elephant’s ears, another touches the trunk, a third touches the tail and a fourth touches the elephant’s huge feet. They become convinced that each is studying a different animal. Arguably similarly, in my work I aim to simultaneously analyse data from very different sources – genetics, hormones, brain imaging and psychological measures. All these measures are used to assess one condition – autism – but look at very different parts of the same phenomenon. It is quite a challenge to attempt to synthesise very different levels of analysis into a coherent story.  

  What do you think will change in autism research over the next five years?

One big challenge facing the field of autism research is closing the gap between basic research and making it relevant to people who live with autism. Our understanding of autism is evolving and with this we implicitly change our definition of autism, but we are not yet changing our tools for identifying autism, or thinking enough about real-world relevance of research. I hope that in the coming years we will see better understanding of the different subtypes of autism, informed by advances in the understanding of the biological mechanisms that underlie different types of autism, and with more scientists thinking hard about how to make such psychobiological research relevant. 

An example in my own specialty would be if we identify genetically defined subgroups of people with autism who respond differently to oxytocin nasal sprays, so that we can develop ‘precision-medicine’, but always only after all the appropriate checks and trials have been conducted for safety and unwanted side-effects. I am not a scientist who is seeking a ‘cure’ for autism, and autism is part of who the person is, but if treatments (biological or psychological) come along that alleviate symptoms that are causing disability, leaving the individual to fulfil their potential to use their different skills and talents, I would see that as a good outcome.

   If you were offered a large donation from ART, what would be your dream research project?

The best way to understand autism is to investigate the condition from all possible directions in large enough samples, so as to capture the whole spectrum. My dream project would be to recruit a very large cohort of pregnant women and collect comprehensive measures of the intrauterine environment, including hormone levels, maternal nutrition, exposure to viral and bacterial infection, fetal development, etc. I would then follow these infants from soon after birth throughout the life time, collecting psychological measures of empathy, systemizing, sensory and repetitive behaviour, social skills, etc. as well as biological measures such as the infant’s genotype, epigenotype, hormone levels and brain function and structure. I would follow how these different measures develop and change throughout the entire lifetime and how they may predispose someone to be diagnosed with autism or have more autistic traits. I would examine those factors that increase quality of life and those factors that are associated with a decrease in quality of life. I am delighted that the Autism Research Trust is funding small scale studies of this type in both Cambridge (at the Rosie Hospital) and Sheba Hospital in Israel, and I hope when I return to Israel to contribute to this exciting international collaboration and apply for funding with ART to scale it up.

   Can you tell us about some of the people you’ve met while working with the ARC?

One of the best things about working at ARC is to be able to work with some truly amazing people. Each researcher focuses on a slightly different aspect of autism or uses a different methodology, so just by talking with your office mates about their field of research you learn so much, and open your mind to new ideas and different approaches to the same issue. Everyone here is extremely talented and smart, with true passion for both understanding autism but more importantly, helping people with autism lead happy and full lives. 

In addition to working at ARC I have enjoyed being able to put my clinical skills into practice by working in the autism team at the Brookside Family Clinic, part of the NHS. There I had the chance to meet children with autism who are dealing with different challenges associated with their diagnosis. These encounters have taught me so much about autism, and the daily struggles that children with the diagnosis, and their parents, sometime experience; an understanding that is beyond what is written in any diagnostic manual. 

  What do you do when you’re not working?

When I am not working I am with my family – my husband and our 2-year old son. We love going to the park to feed the ducks, meet up with friends, and just being together. What’s nice about the ARC is that it is very family friendly – the ethos is that family comes first. That’s so important as a mother and as scientist, to have the flexibility to be able to enjoy both as fully as possible.

  What would we be surprised to know about you?

I wrote my first paper when I was 10 years old. Granted, it was for a local newspaper about a school outing, but my parents were very proud and they still have the newspaper clipping!

 

For more information, please email Elizabeth Coyne on elizabeth@autismresearchtrust.org.

 

 

Helping Understand the Genetics of Autism

 

Professor Simon Baron-Cohen and researchers at the Autism Research Centre, University of Cambridge, are investigating the genetic and epigenetic basis of autism with the help of families.

Are there three individuals in your immediate biological family (parents, children, and siblings) who have an autism diagnosis? We are searching for such families to study their genes, and how these genes are switched on and off, in order to understand the genetics of autism.

Participants would be required to provide two saliva samples, a copy of their autism diagnosis clinic reports, which would be securely stored confidentially, and complete a 10 minute questionnaire.

The researchers can either post the saliva kits, questionnaires and other documents to you, for you to complete and post back using a pre-stamped envelope, or they can visit you in your home on a mutually agree date.

If you think you and your family are eligible and interested in taking part, please read the participant information sheet here.

If you wish to participate, please email Clara Buckingham (familystudy@autismresearchcentre.com) with your contact details (telephone number, email and postal address).

 

Thank you for helping autism research.

This study is funded by the Autism Research Trust and the Templeton World Charity Foundation, Inc.

 

Autism Awareness Month – Fundraising and events

 

Autism Awareness Month took place in April and this dedicated time provided a brilliant opportunity to pull out all the stops with fundraising challenges and events! Take a look at some of the activities that took place…

Awareness Walks

Inspired by keen ART fundraiser Jenny Jones, and family, we promoted the Awareness Walk as a super way to raise money for Autism Awareness Month.

A big thank you to Jayne Tasker who rallied the troops for an Awareness Walk in Wimbledon Park on 16th April and raised £540!   

Stella & Dot

The boutique jewellery and accessories company proved a successful lure at a fundraising event on Thursday 28th April. Sarah Hudd, mother to Finn who is autistic,  kindly donated her commission and a raffle prize to help raise funds for ART. Over £150 was raised.

The Charity Dinner Party – with Celebrity Chef Jo Pratt

ART brought wonderful TV chef and author, Jo Pratt, on board to support our cause for Autism Awareness Month, who showed us how hosting our own charity dinner parties is easy and lots of fun! www.jo-pratt.com

Other local activites and events

Thank you to Malden Manor School in Surrey who celebrated our cause during Schools’ Autism Awareness Week (14th -18th March), enjoying workshops, wearing certain colours and having a toy sale – all for ART. Over £200 was raised.

Thank you to Southfields Community Choir who raised over £1,000 for ART through their Spring Charity Concert on 19th March.

Abingdon House School had a Dressing Up Day for the children last year raising a terrific amount for ART, their charity of choice – and have just recently organised a cake sale and mufti day, complete with posters around the school. In total nearly £400 was raised.

 

 

ART Newsletter March 2016

 

Find out what we have been up to in our latest newsletter here.

To subscribe to our bi-annual newsletter, click on the link in the side menu “Sign up to our newsletter”.

 

A Summary of ART’s Progress

 

ART was set up in 2010 and with your generous support we have funded or co-funded an increasing number of research projects at the Autism Research Centre, Cambridge University, in a wide range of programmes.

Since the first publication in 2012, 36 high quality scientific articles have been published – more than one article per month – contributing to the international effort to understand the causes of autism and to evaluate what helps.

To further our understanding of the causes of autism, Cambridge researchers have been investigating promising candidate genes for autism, examining levels of hormone present in the womb during pregnancy, and identifying differences in the brain between people with and without autism, as well as the differences in the biochemical profiles in males and females with autism. Research has also been looking at what happens to the autistic brain across development, particularly during adolescence and whether girls and women with autism are at raised risk for sex steroid hormone-related conditions such as Polycystic Ovary Syndrome.

At the psychological level, they have been testing how people with autism read emotions in other people’s eyes, their difficulties in empathy and their ability to systemize, that is, to find patterns in the world and understand how things work. The research team have also been evaluating screening tests for both children and adults on the autism spectrum, and have also explored the sensory hypersensitivity in people with autism, and how this might relate to attention and altered perception. We hope that further research in these areas will lead to the availability of diagnostic tools earlier in life.

To provide aids to help in everyday life, ARC researchers have been studying if giving the hormone oxytocin through a nasal spray might help improve social skills such as eye contact. They have also been conducting clinical research, exploring if girls and women with anorexia have higher levels of autistic traits than was previously recognized. Taking data from the Cambridge-based NHS Chitra Sethia Autism Centre clinic for adults with Asperger Syndrome, co-funded by ART and the National Autistic Society, the researchers have found that suicidal thoughts are disturbingly high in adults with Asperger Syndrome. And looking outside of the West, they have found that autism is undiagnosed in countries such as China.

ART hopes that, with further funding in high-quality research, we will be able to better understand the causes of autism so that diagnosis can be made even in infancy. Following early diagnosis, the Cambridge team plan to validate interventions to identify what will help those affected by autism.

ART is proud to have contributed funding to the 36 research projects and scientific journal articles summarized here, which have been made possible with your support.

Funding high-quality research will make a difference to the lives of those with autism.

 

 

PhD student from the the ARC speaks at the United Nations

Autism Research Centre PhD student Alexa Pohl took on the impressive duty of speaking at a thematic briefing for the United Nations (UN). Ms Pohl, who has just entered the final year of her PhD, was asked to speak as a disability advocate at a briefing for the Committee on the Elimination of all forms of Discrimination Against Women (CEDAW).

The Convention on the Elimination of all forms of Discrimination Against Women was adopted by the UN General Assembly in 1979 and defines what constitutes discrimination against women, as well as outlining the ways in which such discrimination can be eliminated. The Convention represents a large body of work by the Commission on the Status of Women – an intergovernmental body dedicated to gender equality and empowerment of women – and is often referred to as the international bill of women’s rights.

Ms Pohl was asked to address CEDAW to present research on the stigma surrounding autistic mothers, as well as to participate in a discussion on this topic. This opportunity came about due to her work on a pioneering study that focuses specifically on the experiences of autistic mothers. The study, carried out at the Autism Research Centre within the Department of Psychiatry, aimed to explore the experiences of autistic mothers in order to understand what challenges and issues they feel are the most relevant to their daily lives, and to understand what coping strategies and support they use to meet their needs.

The study stemmed from a realisation that there was a distinct lack of empirical evidence on how autism, a lifelong neurological difference, might impact a woman’s experience of parenthood. Previous studies focusing more generally on motherhood in women with learning difficulties or mental health issues indicate that motherhood is a desirable identity for many women with these conditions; however, many mothers with a mental health condition or intellectual disability face stigmatization and isolation. While distinct from autism, the research from these other domains suggests that this is an important area to understand for autistic women.

During the early stages of the study, Ms Pohl and Professor Baron-Cohen hosted a Patient and Public Involvement (PPI) group to foster communication with individuals within the autism community to assist with the study. This approach aimed to directly integrate the autism community into the research process and, in particular, to gain insights directly from autistic mothers.

It was through this PPI group that Ms Pohl met Monique Blakemore, an Australian autism advocate from Autism Asperger Advocacy Australia, who invited her to join the panel of autism researchers and advocates presenting at the UN briefing. Along with Ms Pohl and Ms Blakemore, the panel featured Dr Catriona Stewart of the Scottish Women’s Autism Network, and Ms Magali Pignard, a representative from the Alliance Autiste in France. The meeting, held across October and November at the Palais des Nations in Geneva, focused on approaches to ending all forms of discrimination against women. Ms Pohl was asked to present the preliminary results from the study and to take questions from members of the committee.

We spoke to Ms Pohl who commented on the research project and the experience of speaking at the UN.

With the dramatic rise in autism prevalence, we should be living in a society that is aware of both the capabilities of people on the autism spectrum, as well as the challenges they face. Although great progress has been made in autism awareness, autistic women are overlooked, as they represent a minority within a minority. For years, autistic women have been advocating for better access to services (such as diagnostic assessments) and adult autism awareness in domains where autistic women need it most, including in reproductive healthcare and amongst professionals who may interact with an autistic mother. We hope that the results of our research can convey the importance of considering autistic mothers in service provisioning and policy, and the briefing for CEDAW was an excellent first step towards educating decision-makers who can create change for autistic mothers.”

NB: We use identity-first language (i.e. autistic adult) in this article, as many, but not all, adults with autism express a preference for identity-first language.

Written by Owen Parsons.

http://www.psychiatry.cam.ac.uk/blog/2015/12/15/phd-student-gi/

 

#GivingTuesday

Tuesday 1st December was #GivingTuesday.

After the sales of Black Friday and the online shopping boom on Cyber Monday, #GivingTuesday is an opportunity to come together to show the world why it’s good to give. Whether it’s making a donation, volunteering your time or just spreading the word at the start of the Christmas shopping season, #GivingTuesday is a call to action for everyone who wants to give something back.

We hope you were able to join the millions who are making #GivingTuesday the huge success that it is by contributing to the Autism Research Trust. However, if you missed it this year, make a note in the diary for 2016!

Funding by ART is vital for research projects at the ARC, and all the funding is raised from the public. We need your help to continue to break new grounds in autism research and to further our knowledge of autism to ultimately enable earlier diagnosis and to find valid and evaluated interventions.

To donate to ART to help research into autism, you can donate using online using our #GivingTuesday donation form here

 

@AutismResearchT

 

https://app.etapestry.com/onlineforms/AutismResearchTrust/Givingtuesday.html

 

 

In memory of Dave Kowall

We are very grateful to the family and friends of Dave Kowall for donating in his memory to the Autism Research Trust.

To donate, please click on this link.

In the “Tribute Type” field, please select “In memory of”, and in the field underneath please enter Dave Kowall.

Please contact charlotte@autismresearchtrust.org if you are experiencing any difficulties.

Thank you for your generosity.

 

Jools Holland at the Royal Albert Hall, London

Can you spare some time to help us with bucket collections at the Royal Albert Hall on the 28th November 2015? We are looking for volunteers to collect money from the audience after the show and would love to see you there! We’re also hoping to get seats for all those that help out.

Please get in touch with Sam Van Niekerk on sam@autismresearchtrust.org with your availability and we can give you all the details.

 

 

Virgin Money London Marathon

24th April 2016

Registration fee: £100

Minimum sponsorship: £1,600

Take part in this iconic marathon and raise money for ART. Just apply for our Charity Ballot place today by filling in the application form to register your interest. We will let you know if you have been succesful in getting a place in November after the public ballot has been drawn.

Did you enter the ballot for the Marathon? If you’re successful in getting your own place we would love you to join Team ART. We are able to support you with training guides and fundraising ideas. By wearing our logo on your running vest you will also be raising awareness for ART and autism.  Download your Own Place Form and get started today!

Request your London Marathon Application and contact Elizabeth Coyne on elizabeth@autismresearchtrust.org if you have any questions. 

The deadline for your application for our charity place is 31st October 2015 and by filling in the application you are not guaranteed a place.

 

Bricks for Autism offer Lego®-based therapy training

Training is being offered in Lego®-based therapy for professionals working in the field of autism. Training will be run a few times a year in Cambridge, UK and is suitable for psychologists, speech & language therapists and education specialists.

The next course will be on 20 November. To book on a course please contact Gina by emailing info@bricks-for-autism.co.uk or by filling out the contact form on www.bricks-for-autism.co.uk

Lego®-based therapy is a social development programme for young people with autism spectrum disorders or related social communication difficulties. Young people work together to build Lego® models and through this have the opportunity to develop social skills such as turn taking, collaboration and social communication. To find out more visit the Bricks for Autism website. 

10% of profits from Bricks for Autism will be donated to ART www.bricks-for-autism.co.uk


 Profile of Richard Bethlehem, PhD student at the Autism Research Centre

Name: Richard A.I. Bethlehem

Job Title: PhD Student

 

  • How long have you been a researcher at the Autism Research Centre (ARC)?

I am currently starting the third year of my PhD, before I started as a PhD student with the ARC I was a visiting student from Utrecht University here for 9 months.

  • What influenced your decision to work in autism research and specifically at the ARC?

After doing my internship with the ARC I realised how much I enjoyed putting my graduate and undergraduate training into practice in a clinically relevant setting. Coming from a varied interdisciplinary background (Neuroscience, Artificial Intelligence, Philosophy & Psychology) it felt like all the different aspects of that background really came together in a meaningful way.

  • Can you tell us about the projects you’re currently working on?

Currently I am doing a pharmacological brain imaging study to investigate the effect of oxytocin nasal sprays on brain functioning and behaviour. This is a so called case-control study, meaning we have both neurotypical volunteers that take part as well as volunteers that have a diagnosis of autism or Aspergers. In addition to this I am also working on existing brain imaging data to investigate functional connectivity between different brain areas.

  • What do you find most challenging about your work?

Sometimes the most challenging parts of the work are actually the very practical logistics. In a pharmacological imaging study there are so many people involved and timing is always very crucial as the drug we use has a very specific timeframe in which it is active. This work would certainly not be possible without the efforts of all those people; clinicians, radiographers and not in the least the volunteers. It is always very rewarding to see all the pieces fall together.

  • What do you think will change in autism research over the next five years?

That is a very interesting question and undoubtedly the one every researcher in the field is asking himself quite frequently. Personally I hope that we will see more sub disciplines (e.g. neuro imagers, psychologists, geneticist, psychiatrists, molecular biologists etc.) working together in a collaborative effort to better understand autism. At the same time I think that there might be a more general shift in neuroscience to looking at more than just the brain. There are some very exciting advances being made on, for example, the gut-brain axes and neuroinflammatory effects on brain and behaviour.

  • If you were offered a large donation from ART, what would be your dream research project?

My dream research project would probably be two-folded. On the one hand it would be very interesting to look at very fundamental aspects of the oxytocin system and the brain functional wiring. For that I would ideally like to conduct a PET imaging study to look at oxytocin receptor distributions in the brain in-vivo to better understand where and how oxytocin effect the brain. At the other hand I would like to have a more pragmatic approach and do some clinical trials to see if oxytocin, perhaps combined with other therapies, can help people cope with some autistic symptoms.

  • Can you tell us about some of the people you’ve met while working with the ARC?

Apart from all the lovely people at the ARC who are really dedicated to provide a better understanding of autism, I have met so many kind and helpful volunteers. Them dedicating their free time to helping us researchers out is absolutely vital for the work we are doing. Their enthusiasm to helping is probably one of the main motivators for myself and others in the ARC.

  • What do you do when you’re not working?

When I am not at work you are most likely to find me on a tennis court, at home reading a book, unsuccessfully trying to learn the saxophone or out with friends.

  • What would we be surprised to know about you?

I think a lot of people would be surprised to know that I started out in Philosophy and Artificial Intelligence before switching to Neuroscience and Psychiatry.