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Top ten priorities for autism research launches today

Today (26 May) we will launch the results of our year-long consultation on autism research priorities in partnership with the National Autistic Society and many other autism charities.

The process, known as a James Lind Alliance Priority Setting Partnership, is well-validated and involved autistic adults, parents and professionals working together to decide the top 10 questions for autism research – further details can be found here: www.autistica.org.uk/top10.

The results will be announced on Twitter (@AutisticaUK) and Facebook (@Autistica Charity) from 10am in reverse order, with a question being released every half hour using the hashtag #autismpriorities. The full top 10 will be shared at 3pm.

Please share the results with your networks and join the conversation!

We will let you know our next steps here once the full list is announced this afternoon.

Female researcher looking through microscope in a laboratory.

Folate consumption claim

In the news today is a claim that excessive consumption of folate by pregnant women could lead to a higher risk of the future child developing autism. You can read the Independent article on the news here.

We do not want this news to alarm readers, so have asked our Research Director, Dr James Cusack to comment on the science behind the claim:

“Although this finding is striking, it is vital to remember that this research is at a very early stage.  In fact, this information has simply come from a single poster at a conference.  It is far too early to say whether this finding is correct and so families should not be overly concerned.

It is of course important to understand whether there are any environmental factors which increase the likelihood of autism.  As the authors of this poster themselves suggest, to actually understand whether there is a link between increased folate and autism, we need far more data from other cohorts, more in-depth peer review, and further data analysis.

To put this result in context, we have had an array of proposed environmental factors associated with autism over the years.  For example, early research suggested anti-depressant use in mothers increased the likelihood of autism, but careful statistical analyses, and control of confounding factors, disproved this theory.

It’s exceptionally important that when we talk about autism research findings, we consider the evidence carefully and proportionately.  Autism researchers should be well aware of this, following the false link between MMR and autism and the huge societal issues this has led to.”

 

The British Pregnancy Advisory Service have said:

“Folic acid is proven to dramatically reduce the risk of neural tube defects (NTDs) such as spina bifida, which causes life-long disability, and anencephaly, a fatal condition where the baby’s brain and skull do not form properly”.

“We would absolutely advise women who are planning pregnancies to continue to take folic acid supplements, with the current recommendation to continue with these up until the 12th week of pregnancy.”

 

If you have any concerns about research claims such as this one, please contact:

info@autistica.org.uk

Samuel London Stock Exchange

Young boy with autism opens the Market at the London Stock Exchange

World Autism Awareness Week.

6 April 2016
Tech entrepreneur and founder of autism research charity Autistica Dame Stephanie Shirley joined Samuel, a 7 year old autistic boy today, to open the stock market and ring the bell for autism research. He is the youngest person to ever open the market. Samuel was diagnosed with autism aged 3. He is a happy and bright boy but his communication difficulties mean that everyday life is extremely challenging, and he will require a lifetime of support. It is hoped that this ceremony for World Autism Awareness Week can draw attention to the need for increased understanding of this complex condition from diagnosis right through to old age.

Samuel is typical of thousands of children who have autism: he started life as a happy toddler who reached all major developmental milestones, but aged 2, his behaviour changed and the little speech and skills that he had began to disappear. His parents Katie and William fought hard for an early diagnosis, and feel strongly that more research is needed to give families the help that they need as early as possible.

Samuel’s mother Katie said:
“The earlier parents get a diagnosis, the sooner they can start educating themselves, seeking support, and adapting the ways that they care for their child with autism.”

“Early diagnosis and support is just one part of why I think Autistica’s research is so important. People forget that autism is a lifelong condition and I worry about the future for Samuel. I worry about when he starts to be aware that he is different, and I worry about when we are no longer around to support him.”

Katie was keen for Samuel to take part but explains that for him, it was a challenging experience:
“We worked hard with Samuel to prepare him for today so that he knew what to expect. He struggles with strange people and places, bright lights and music, all of which are a big part of the ceremony but the Stock Exchange kindly made some allowances to make him feel comfortable.”

“We can never predict how he will react in new situations. It is crucial though that we support him to do things like this that he can be proud of, and important that people see the real challenges that autism can present.”

Jon Spiers, Chief Executive of Autistica, the charity that organised the opening with the LSE, said:
“We were thrilled to be given this opportunity to highlight the need for autism research, which remains one of the most underfunded areas of medical research. We are very grateful to Samuel and his parents for representing Autistica at this prestigious and iconic ceremony.”

Dame Stephanie Shirley, who founded Autistica in 2004, had a son with autism and feels passionately that research is key in providing better support for those with the condition:
“I made my fortune in business, and it is an honour to be back here today so many years later to talk about the subject that is dearest to my heart. I have given the majority of my wealth away to fund autism projects. Although we have made some progress, there is still so much we don’t know about autism and how to best support those like my late son Giles. We need the government and funders to realise that research is key to really make a long and lasting difference to people’s lives.”

Diane Côté, Chief Risk Officer, London Stock Exchange Group, said:
“We were delighted to welcome Autistica, to London Stock Exchange to open the London market and raise awareness of autism during World Autism Awareness Week. Autistica is an inspirational charity, campaigning for medical research to understand the causes of autism, improve diagnosis, and develop new treatments and interventions, making a real difference to the lives of those living with autism.”

young autistic girl

We need to do more to improve early diagnosis in autism

New research finds that the age of diagnosis for autism has not changed in ten years

Autistica-funded research at Newcastle University has found that the age at which children are diagnosed with autism has not decreased in a decade and as a result many are not getting access to specialist services early enough. Their study published today shows that the age of diagnosis still averages 4 and a half years (55 months).

In the biggest study undertaken in the UK of children with autism, the team analysed data between 2004 and 2014. Over this period, they found that even those classed as being diagnosed early – under the age of three – were identified at age 30 months, the same as a decade before.

You can read the full paper here in the Journal of Autism and Developmental Disorders.

Early support needed

Lead author of the study Dr Jeremy Parr, said :

“There’s a growing body of evidence showing that early intervention can improve social and communication skills in children with autism spectrum disorder.

“Many children receive a diagnosis later than they could have done, this means that they and their parents have to struggle on longer than necessary without suitable support or understanding of their child’s difficulties.

“We need to improve awareness of the signs of autism spectrum disorder in very young children. We need health visitors and GPs to have the training and support to help them identify young children with ASD.

“Some children with autism are very difficult to diagnose as their difficulties are less obvious, and they won’t be picked up until they’re five or older. But for most children there are early signs of autism that could be picked up in the second or third year of life, if not before – signs such as limited social interaction, speech delay or loss of speech.”

Autism database

The study, the largest of its kind involving 2,134 children and families, was made possible thanks to ASD-UK a database funded by Autistica which gives accurate data about children with autism and provides families with the opportunity to take part in research studies.

Boys, who as expected make up 82.7% of the database, were identified as getting an earlier diagnosis than girls and those with Asperger syndrome were diagnosed later. The team also found that children who were non-verbal or whose language repertoire included only single words or echoing sounds were diagnosed earlier.

Dr Parr and his team work as part of Newcastle Academic Health Partners, a collaboration involving NHS trusts and Newcastle University. This partnership ensures families benefit sooner from new treatments, diagnostics and prevention strategies.

Carol Povey, Director of the National Autistic Society’s Centre for Autism, said:

“This important study shows that professionals still aren’t picking up the signs of autism early enough. An early diagnosis can be life-changing for families. It can help them understand their son or daughter, give them essential information about what might help and unlock professional advice and support.”

“Autistica will continue to invest in research to help identify the early signs of autism with a view to ensuring accurate and timely diagnosis.  We are also committed to funding innovative interventions to support families during and after diagnosis” James Cusack, Research Director, Autistica.

 

You can get involved in autism research yourself or take part as a family member. Find out more and join the database here:

GNR-featured-image-answers

Personal tragedies, public crisis

On Friday 18th March, Autistica launched a report: Personal tragedies, public crisis, highlighting new data on tragic levels of early death in autism. The report shows how people with autism are dying 16 years before their time, with the leading causes of early death being epilepsy and suicide. Life expectancy in autism has been very much overlooked before, and there is virtually no research in this area, but we aim to change that.

Before we launched this report we understood that this news would be shocking for many people, so made sure that whilst putting the report together, we worked very closely with autistic individuals, family members, academics, doctors, professional bodies and fellow charities to ensure that we were communicating these statistics and recommendations for action as sensitively as possible. We held a press conference to ensure that the media got the true facts, and stressed with them the need to present the news responsibly with families and individuals affected in mind.

As a research organisation we hope that this new data, although saddening, brings attention to the issues, and importantly encourages people to take action.

You can read the full report here.

Autism East Midlands have also kindly produced an easy read version of the report.

For those that have concerns, there is an easy read guide for where to go for help.

 

If you want to take action as a result of hearing about the problem of early deaths in autism, there are five ways you can help now:

1. Sign the petition

Tell David Cameron it’s #timeforanswers and that we must undertake a National Autism Mortality Review. The data that we highlight in our report is from a large Swedish study so in order to get funders, government and services to really take action in the UK, we need to understand the problem here. If we can assess clinical and mental health services and understand best practice, recommendations can then be formed for reducing early death in autism. You can sign the petition here

2. Email or write to your MP

There are practical steps which we know should be taken now to extend the lives of autistic people now. Tell your MP to lobby for more research funding, clearer identification of autistic people, better health checks, and an autism-friendly NHS. Ensure you MP ensures action is taken following the unacceptable findings from the Mazars report which investigated the deaths of people with a learning disability or mental health problems and found clear evidence of systemic failures. You can get in touch with your MP here.

3. Submit evidence to the Westminster Commission

The Westminster Commission on Autism are conducting an inquiry in to the access to quality of healthcare for autistic people. Let them know how improvements can be made by making a submission here.

4. Get involved in research

To further understand why autistic people are dying early, we need research studies to track outcomes of families and autistic people. We currently fund two research databases at Newcastle University to enable people to take part in research, and to further the progress of families and autistic adults. If you have a child with autism you can sign up to this database here. If you’re an autistic adult you can sign up to this database here.

5. Help us raise money to increase research funding into the major drivers of early death

We aim to raise £10 million towards tackling this mortality crisis in autism. We want to understand the views of the autism community, the link between autism and epilepsy, the factors which lead to suicide, poorer physical health, and crucially how we can lower the risk of death and improve quality of life for autistic people. We need your help to raise that money. Find out more here.


If you are affected by the issues highlighted in this report, these organisations offer advice and support:

Samaritans helpline: 116 123 (freephone) or jo@samaritans.org www.samaritans.org

Mind helpline: 0300 123 3393 or info@mind.org.uk or text 86463 www.mind.org.uk

The National Autistic Society: 0808 800 4104 www.autism.org.uk

SUDEP (Sudden unexpected death in epilepsy)

Action: 01235 772850 www.sudep.org

Epilepsy Action: 0808 800 5050 or helpline@epilepsy.org.uk www.epilepsy.org.uk

Epilepsy Society: 01494 601400 www.epilepsysociety.org.uk

Cruse Bereavement Care: 0844 477 9400 www.cruse.org.uk

Luke Jackson Sex Drugs and Aspger's Syndrome Autistica Book Review Autism Research

Book Review: Sex, Drugs and Asperger’s Syndrome (ASD), A User Guide to Adulthood by Luke Jackson

Sex, Drugs and Asperger’s Syndrome (ASD), A User Guide to Adulthood by Luke Jackson – Jessica Kingsley Publishers, 2016

Adolescence, our transition from childhood to adulthood, rarely runs smoothly.  It is that hell where we demanded freedoms that were only dizzying because of our ineptitude in being able to manage them.    My own adolescence was appalling; my parents deserved awards for sticking with me.  I thought this experience would put me in pole position for understanding the adolescence of my own children; I was wrong.  If there was a button that would, when pressed, propel a child from new teenage-hood to the budding adult he or she is set to be, then parents would fight for the right to press it, and yet where then would children learn to manage without their parents, to work out their own parameters?

Luke Jackson’s new book, ‘Sex, Drugs and Asperger’s Syndrome”, is, as its title goes on to say, that user guide to adulthood that we all need, ASD or not.  The interesting thing about adolescence, the period when everything is new and different and frightening, is that we don’t know what we don’t know until life propels us into that first situation when we have a feeling that we should have known.  Of course we can’t ask parents, and rarely I suspect do students ask their teachers.  Luke admits to struggling with the sex-education concept of a banana being a penis and the vagina a diagram.  We all, as children no doubt do now, sat amongst our peers pretending we knew all about the banana analogy whilst all the while terrified that we did not.

This is a brilliant book.  Luke writes beautifully, engagingly and with wisdom.  There is nothing he shirks, it is all there, all the drugs, all the pitfalls of relationships, all the social gaffes and mistakes, all described with humour and without judgement.

Luke tells us he wondered whether or not to include the chapter on bullying; I am glad he did.   He writes compellingly about its long-term effects on self-confidence and esteem, and is rightly contemptuous of those whose advice is that it is ‘all part of growing up’ and ‘best ignored’. The damage done by bullying is horrific, and we know how many children and young people with ASDs have been excluded from school or become school refusers because of the uselessness and injustice of these two remarks and what they can lead to. Luke acknowledges that a bully is, indeed, best ignored, but he also knows the huge amount of work needed for a young person with ASDs to have the skills to be assertive enough to ignore the bully.  He describes his own journey, peppered with details of his failures and difficulties – including some very deep lows – as well as his successes, honestly and with no sense of self-pity, giving the reader the view that each success was by no means easy, but he achieved it eventually.

Luke’s explanation of the oft-disliked term ‘challenging behaviours’ is exactly as I understand it after years of working with people with ASDs.  He says:  “Challenging behaviour can become evident in the form of disruptive, often physically aggressive behaviour.  It can manifest in extreme forms, like self-harm, scratching, biting oneself or others, or through things like flapping or pica.  What’s important to note is that these are reactions to external stimuli, and when analysing how to deal with challenging behaviour, the cause is often overlooked.”  I agree wholeheartedly with this statement.  In all the schools I ever worked in, when a child was driven to using challenging behaviours (whilst not an ideal term I do like it better than ‘violent’ or ‘attacking’ or ‘aggressive’ behaviours), then the staff team would use functional behavioural analysis to try to work out what had driven that child to that point and how we could avoid that happening again.  I know that this is not necessarily the case in all educational settings.

I have two proposals for this book.  One, that parents forbid their children to read it. This would make it the most sought-after and read book amongst adolescents, as well read as Lady Chatterley was in her banned day.  Second, that the Secretary of State for Education makes this mandatory reading for every single teacher in the UK.  It would without question help teachers’ understanding of the struggle facing pupils with Asperger’s Syndrome in their classes. Since we now know that autism affects approximately one in 80 of the population, this would have a massively positive effect on many children in our schools – not a bad win-win wouldn’t you say Nicky?  It would also, I hope, shame that teacher who told Luke “when you come into my class, leave your autism at the door”.

I am off now to re-read ‘Freaks, Geeks and Asperger Syndrome’, the prequel to this book, to carry me through the arid period whilst I wait for Luke’s next user-guide for any other aspect of life.  It is certainly going to be as spot-on as these have both been for all of us, for those of us with ASDs and those of us without.

Review by Jude Ragan, Autistica Trustee

Ciara

Autism and catatonia – our story

by Ciara & Helen Humphreys.

My daughter Ciara is 22. She was diagnosed with Aspergers Syndrome when she was 4 and with severe autistic catatonia when she was 9 years old.

She has experienced numerous episodes of catatonic stupor (immobility lasting most of the day). On one occasion and shortly after transitioning to adult services, she became catatonic for 4 days. During this time she stood almost motionless in the same position and was unable to speak, eat, or drink unaided. She experienced intense levels of anxiety as she feared everything around her was contaminated. During these episodes she was both physically and mentally stuck. The mental stuckness resulted in a continuous loop of negative thoughts constantly playing over in her mind.

Increased stress and anxiety, high levels of stimulation and periods of increased self-awareness can lead to a worsening of her condition.

Although Ciara’s condition is not currently acute, she continues to experience daily episodes of stuckness lasting from a few minutes to around an hour. Mirrors appear to be a particular trigger and result in Ciara losing track of time. This impacts her ability to organise her daily activities which leads to increased feelings of frustration and anger and restricted educational and occupational opportunities.

Behavioural approaches can be effective if Ciara follows guidelines*. Managing her anxiety is the single biggest challenge for Ciara and for those supporting her.

We have found knowledge of catatonia in autism to be poor amongst mental health professionals and specialist training on the complications difficult to access. The use of antipsychotic medication appears to result in a worsening of Ciara’s symptoms and with no clear evidence-based treatment protocols in place, we are very concerned for Ciara in the future when we are no longer able to advocate on her behalf.

Studies to date highlight the need for quality research and better reporting of side effects and adverse events. Without this much needed research, we fear that people with autistic catatonia face a very uncertain future.

Reference:
Shah, A., & Wing, L. (2006). Psychological approaches to chronic catatonia-like deterioration in autism spectrum disorders.

A clinical view: Dr Amitta Shah, Consultant Clinical Psychologist

Catatonia is a complex neuro-psychological disorder which can affect children and adults with Autism Spectrum Disorder, including those with High Functioning Autism and Asperger Syndrome. Clinicians do not generally associate Catatonia with Autism, and thus the condition is often misdiagnosed and wrongly treated and hardly ever picked up at an early stage. Clinicians recognize Catatonia easily when the person is in a catatonic stupor state. This is probably why Ciara’s Autistic catatonia was diagnosed at the age of 9, but this is unusual. Individuals with Catatonia may never show the full blown Catatonia in this easily recognizable form, but show various other difficulties associated with movements, volition and activity.

Specific indicators of an onset of Autistic Catatonia can include any of the following:

• Freezing during actions
• Increase in repetitive movements and hesitations
• Difficulty in crossing thresholds and completing movements
• marked reduction in the amount of speech or complete mutism
• difficulty in initiating and inhibiting actions
• increased reliance on physical or verbal prompts for functioning
• increased passivity and increased social withdrawal
• increase in repetitive and ritualistic behaviours
• getting locked in postures

There is very little research evidence to guide medical and non-medical treatment of Autistic Catatonia. (Summarised in Dhossche et al, 2006). The lack of research interest and funding in this area is of major concern. As seen in the case of Ciara, Catatonia poses huge challenges and worry about the future to the individual and their families/carers. It causes enormous stress, frustration and affects the quality of life of the individual in extreme ways.

In the absence of relevant research, it is important for professionals and carers to refer to guidelines developed by experienced clinicians. (Dhossche, Shah and Wing (2006). It is imperative for clinicians not to overlook that psychiatric medication may often trigger or worsen Catatonia in individuals with Autism (as reported by Ciara). Psychological approaches which investigate the individual’s anxiety and stress and address this using a non-medical holistic management plan based on a comprehensive psychological assessment can be very effective (Shah & Wing, 2006).

References:
Dhossche,D. Shah,A. & Wing,L. Blueprints for the Assessment, Treatment and Future Study of Catatonia in Autism Spectrum Disorders. Chapter in book edited by Dhossche et al (2006) cited below.
Dhossche, Wing, Ohta and Klaus-Jürgen Neumärker (2006) Catatonia in Autism Spectrum Disorders. Elsevier Inc. USA.
Shah & Wing (2006) Psychological Approaches to Chronic Catatonia-Like Deterioration in Autism Spectrum Disorders. Chapter in book edited by Dhossche et al (2006) cited above.
Wing,L. & Shah,A. (2000) Catatonia in Autism spectrum disorders. British Journal of Psychiatry. Vol. 176, 357-362.

Gethin and Alby

Gethin Jones’ request to support Autistica this Christmas

holly

 

 

Dear Autistica supporter,

I am writing to ask you to join me this Christmas in making a gift to Autistica and their vital, world-leading research into autism. A donation of whatever you can afford will help us to diagnose autism earlier and provide effective interventions to help improve the quality of life of children with autism.

Imagine dreading Christmas; finding the loud noises, music and changes in routine frightening. Christmas should be magical and fun but for children with autism the unexpected surprises, the crowds, bright lights and excitement is stressful and upsetting. Parents with autistic children amongst you will be more than familiar with such challenges and will, I’m sure have your own ways of coping. But it doesn’t mean it’s ever easy, or predictable.

My nephew Alby has autism.  He was diagnosed just before his fifth birthday. His unique needs have meant the whole family have had to adapt. This is especially true at Christmas.

Every piece of work that Autistica is able to fund brings us closer to better understanding and supporting the children, adults and families touched by autism.

I speak more about Autistica’s valuable work on this video and hope that it will convince you that a gift to autism research, is not just for Christmas, but has a long and lasting legacy.

Please give today, to change lives tomorrow.

Have a wonderful Christmas and New Year,

Gethin's signature

 

 

 

 

 

 

Gethin Jones is a  television presenter and keen supporter of autism.

ipad cropped

Digital technologies for autism: moving past the headlines towards greater collaboration and partnership

Article by Dr Sarah Parsons.

 

Children are exposed to technologies at increasingly younger ages and so form early expectations about the availability and uses of digital technologies in their environment. Indeed, a report by Ofcom in 2014 found that children are more enthusiastic about, and reliant upon, technologies than adults and that: ‘As a result of growing up in the digital age, 12-15 year olds are developing fundamentally different communication habits than older generations’. Such different habits can raise concerns about children’s wellbeing, for example questioning whether children need a ‘digital detox’ and even whether smartphones are making children ‘borderline autistic’.  Of course, when it comes to children with autism, such concerns are heightened due to children’s social vulnerabilities, something that the Wirral Autistic Society reminded us about in their report on ‘mate crime’ back in the summer.

 

On the flip side, it’s also easy to find evangelical headlines about the miracle of technologies for children with autism for example, ipads that enabled a young man to ‘break his silence’ and teachers being ‘blown away’ by new technology in the classroom. Such contradictory and generally overblown messages also mean that it can be difficult for parents, teachers, individuals and families to know what to believe or where to turn for advice. In more evidence-based territory, research consistently suggests that using technologies to support learning is helpful, for children generally, and also for children with autism. In most cases though, the results (unsurprisingly) are not suggestive of miracles or dangerous obsession, but highlight that outcomes can be positive, but variable, and that children respond differently to different technologies. At least in relation to the autism field, there are also repeated conclusions that research is often limited by the small numbers of children involved and the design of the research.

 

Certainly, as Grynszpan and colleagues note in their paper that grouped together and analysed the findings from different technology-based studies to provide an overall picture of effectiveness: ‘… practice tends to outstrip or outpace the evidence base’. In other words, the uses and development of technologies move faster than the pace of research and so what happens in the ‘real world’ may often be more interesting, challenging, and innovative than what’s happening in research labs. This raises one of the fundamental issues for me in relation to autism education and technology research, which is that often the research takes place without involving autism educators at all, or other members of the autism community for that matter. Moreover, there is a tendency for research to focus too much on the technology itself without proper consideration of the intended contexts and nature of use of the technology – most likely to be within homes and schools. Researchers also tend to huddle in their own disciplinary ‘bubbles’, which can make it more challenging to share ideas and also means that there are regular reinventions of the same technological wheel. As a consequence, in autism and technology research – as with most autism education research – there remains a persistent and substantial gap between research and practice. This is not news. We’ve known this for a long time and often the suggested solution is to make research evidence more available and accessible to those who may wish to apply it in the real world.

 

However, I suggest that this is only a partial solution and one, therefore, that is likely to be largely ineffective. The problem lies in sticking with the same ways of doing research and assuming that if we can only write it up in a different way and get information out more widely then practitioners will start to use it. This approach fundamentally misses the point, not just in my view but also according to the wide-ranging review of evidence-based educational practices, carried out by BERA and the RSA last year. This inquiry concluded that the best chance of improving and embedding evidence-based practices is through involving teachers as ‘active agents’ in research rather than as ‘passive participants’. This means more than writing up research findings in a shorter, more accessible way or providing a website from which to download research papers and guidance.

 

For my own research, this means trying to work in greater collaboration and partnership with those from ‘the autism community’ – a rather clunky phrase used as a short-hand for respectfully trying to recognise the very wide range of interested and experienced people who are involved in autism education in different ways, including autistic children and adults. For more than 15 years I’ve been involved in developing and evaluating innovative technologies for autism, using methods to support the involvement of the autism community in different ways. I’ve learned that such projects are not without challenge, but always there are strengths and benefits to be found in trying to meet such challenges.

 

More recently, I’ve been involved in projects that have aimed to support teachers to be active agents in research, providing a useful model for how this might be achieved through research partnerships with schools, and through the use of creative methods to enable teacher participation and contributions to knowledge. Our ‘Digital Bubbles’ ESRC-funded seminar series also seeks to explore and perhaps ‘pop’ some of the bubbles that exist in the field by discussing current research and practice on innovative technologies for autism, and involving researchers and members of the autism community. Such involvement led directly to the exciting new development of the ASC me I.T. project which allows members of the autism community to download a free app to answer the question: If there was one new technology to help people with autism, what would it be?

 

ASCme. I.T.

The project was inspired by Barnabear – a self-described ‘Aspie and software engineer’ who spoke at the first Digital Bubbles seminar and challenged the audience to consider: ‘What problem would you want solved and what would you invent?’ The ASC me I.T. project, which involves Barnabear as a consultant, aims to tap into the personal experiences and creativity of people with autism, and their families and teachers, to generate ideas about technological solutions that might help them and benefit others. The aim is to work with some of the ideas submitted to develop them further and bring them closer to reality. This is a great opportunity for people from the autism community to get involved from the start so that new developments in digital technologies for autism can be matched to support the needs of users. The bottom line is that digital technologies are, and will continue to be, a normal part of everyday life for most people and so the more we can involve the autism community from the very start of ideas and projects, the more we can try to close the gap between research and practice.

 

 

 

 

 

Sarah ParsonsDr Sarah Parsons BSc, PhD is based at Southampton Education School at the University of Southampton. She has significant research experience in disability related projects and particular interests in the use of innovative technologies for children with autism, the views and experiences of disabled children and their families, evidence-based practices in autism, and research ethics relating to children and young people.

 

 

Support families with autism

Giving Tuesday – 1 December. Support families with autism today

Help us to give a family access to cutting-edge science and the answers they need about autism by involving them in research. Connecting families through our research network provides valuable support to families at what can be a daunting time: immediately after diagnosis.

You can do this by donating just £10 today

Emilia


“My daughter Emilia took part in Autistica-funded research when she was 3 years old. As a direct result of this we were able to move things on quickly with the NHS and get Emilia formally diagnosed. The thing that stuck in my mind was the extraordinary tenderness and understanding shown towards Emilia, my wife and me. My hopes for the future are that autism research can help us to unlock all the potential in my wonderful little daughter and all those like her.” 
Paul, parent of Emilia aged 6. 

 

 

Your support will help us to reach out to these families and provide them with the information that they need to make an informed decision about taking part in autism research.

Text AUTI15 £10 70070 today or make a donation of another amount online.

Give something back this #GivingTuesday. Give a family starting their autism journey, the help that they need today and tomorrow.

You can find out more about the transformative work that Autistica is involved in by watching our new video, released today.