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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.

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).

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




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


“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.


cos website

The Lessons of Autism History: by Cos Michael

Cos Michael is an autism consultant and trainer. She contributes to this Autistica blog series examining what we can learn from history in order to guide future autism research.

The historic sweep of Steve Silberman’s book, Neurotribes illustrates how autism was identified and how perceptions of it changed, throughout the 20th century. The backdrop is of wars where we see how fear of the different infected entire nations, leading to devastation. Wars now darken the 21st century.

Autism is characterised by differences. At present there is much debate about the language of autism and for a reason. Language gives shape to thought and the way autism is described has an impact on the way society responds to autistic people. When I read Neurotribes, there is a warning in the echoes from the past.

Think about the way autism is being described in today’s literature. Articles are written about the burden of autism and hysteria is whipped up about the potential cost of autism crippling economies. As if to validate these fears, the descriptors of autism are overwhelmingly negative. Disease, disorder, impairment, challenge – in nearly every context, autism is pathologized.

It concerns me whether people understand autism as intrinsic to autistic people, or if they regard it as an adjunct? This makes a huge difference to the valuation of autism. If people “have” autism, the implication is that they can “not have” autism. So if we can “cure” the autism, we can keep the people. However, if people “are autistic”, what happens to them if we “cure” autism?

There are geneticists being funded to identify the genetic markers of autism. Are they aiming to ameliorate autistic difficulties or to find a “cure”? Once it is out there, the scientists will lose control over how the technology is used, so whose agenda do they serve? Do they know?

The ethics of medicine has been an issue for thousands of years. The Hyppocratic oath contains a line that should be plastered over the doorway to every clinical research establishment,

“If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.”

Think about difference in this context: if one in a hundred people is autistic, it is a tiny minority, but is it a tiny minority if we scale up to one hundredth of all humanity? How “different” are autistic people? We are 100th of the world population. There are millions of us. We contribute to the societies we live in at every level. Some of us need various degrees of support and a small minority need total support, as do a small minority of people with other differences, physical or mental. We are individuals, contributors, not burdens. We have talents, abilities, preferences and opinions.

So what we should learn from history is that we need to monitor those who use negative language because it creates prejudice. Nobody ought to be marginalised for an aspect of their human condition. For their race, their age, their religion, their mental or physical makeup.

If you want to find out about autism, ask autistic people. We are not “other”, we are one of us and we can speak for ourselves. If you want to build a career as an autism researcher, please make it your aim to improve the lives of autistic people and those around us. Provide a lesson to pass on through history.

Cos Michael,  autism consultant and trainer, specialising in adulthood and ageing. 


More in the series:
The Lessons of Autism History: by Neurotribes author Steve Silberman

The Lessons of Autism History: by parent and GP Mike Fitzpatrick
The Lessons of Autism History: by autism researcher Michelle Dawson

DB Charity of the Year

Autistica wins Deutsche Bank Charity of the Year 2016-17!

We are proud to announce that Autistica has been chosen by Deutsche Bank staff as their national charity partner for 2016-17.

This corporate partnership is valued at around £1.5 million, so it will completely transform the charity and the work that we are able to fund not just over the next two years, but into the future.

We want to thank all of the Deutsche Bank staff who voted for us and recognise the superb contribution of our supporters, Board members and champions within the bank who have gone above and beyond to support Autistica.

A parent who works at Deutsche Bank and supported us throughout the campaign was thrilled to hear the news:

“Our youngest son Charlie is autistic. The world is a confusing place for him. No eight year old should be confused and befuddled by the world. I am thrilled and delighted that my colleagues at Deutsche Bank have seen the value of Autistica’s research in helping people like Charlie achieve the future he deserves. It is incredibly exciting. I cannot wait to see the groundbreaking work that the charity is able to fund as a result”

Matt, father of Charlie

The support from Deutsche Bank will be unrestricted income so will contribute to greatly increased research spend across all of our priorities. This is just one aspect of our ambitious fundraising plan, and we intend to continue to build support across the autism community, but this win certainly sets us on course for very significant growth.

We take over the reins from the current Charity of the Year in January 2016 and have some exciting plans in the pipeline which we will be talking about in due course.

Our webpage for updates on the partnership is: www.autistica.org.uk/db


Charlie at the wheel of a tractor!



Talking about Luke


Luke is 15 , he is a beautiful boy, and he has taken over my entire world. Autism does that .


When he was born, he was going to captain Chelsea or open the batting for England. Girls would adore him and he would be your best pal, my best pal. That was my plan.


We found out when Luke was two and a half that there were some issues with his development and after a series of assessments, he was diagnosed with autism. I fought against it. I couldn’t accept that he wasn’t my idea of perfect and in a way I mourned for my son and for the life I had planned for him. The years after diagnosis we tried every new fad , every opportunity to try and undo the diagnosis. We spent thousands on therapists and teachers, to no avail.


Luke was non–verbal and so it was difficult to understand his needs and his frustrations. We learnt a whole new language based on understanding the noises he made and signs that showed his anger and frustration. Luke didn’t eat much apart from prawn cocktail crisps and crème eggs and he wouldn’t eat at home , so we had to take him out three times per day just to keep him fed.


Over the years we have fought many battles: self harming, stress, anxiety, insomnia. We have put up with stares in the street as people thought he was badly behaved. The challenges that come alongside Luke’s autism have put a massive strain on our marriage and our other children. Having a child with autism is a 24 hour a day job; Luke needs help with everyday things like dressing and eating. In fact I have given up my job now and work from home, as he is too big to be managed by my wife and daughter, and this has been very difficult financially.


We live from day to day but constantly worry for our own mortality, because who will look after him when we have gone?


Autism is complex and unless there is more research, we will never get any further forward in supporting children, adults and their families in having a fulfilling life and contributing to society in the best way that they can. I want to be positive about Luke’s future , I have to be, and I believe that Autistica’s work will  mean a brighter future for him and others like him.


I was wrong about one thing: Luke was and is perfect , just a different kind of perfect.


Father of Luke, aged 15.

Michele Dawson

The Lessons of Autism History: by Michelle Dawson

Michelle Dawson, Canadian autism researcher, gives her thoughts as part of this Autistica blog series examining what we can learn from history in order to guide future autism research.

History tells us about the great importance of standards in human research—standards of science, standards of ethics. History also tells us that segregation harms human beings. The costs and injustices of segregated schools, workplaces, and neighborhoods are well known, but there are other more insidious ways to segregate. Denying a group of people the benefit and protection of standards in research is especially harmful and violates basic human rights. It is segregation at its worst, destructive to human well-being and scientific progress both. Yet in autism intervention research, these lessons have not been learned.

Autistics have long been subject to separate, unequal standards in both research and practice. Claims that standards must be lower for autistics than would be acceptable for anyone else continue to prevail. When it comes to autism interventions, autism-specific low standards have proliferated, by popular demand, and are now nearly universal. History tells us to recognize this as segregation at its insidious worst, but this has not yet happened.

Instead autism organizations and advocacy leaders, including those known for attacking each other, agree when it comes to segregating autistics this way. In their documents, policies, recommendations, and lobbying, they all promote autism-specific low standards—especially in interventions. Ignoring the strong lessons of history, they all support the segregation of autistics from the basic rights and standards which protect and benefit everyone else. Their high-profile disputes are, instead, over which kinds of bad science and bad ethics should be foisted on autistics.

The results are obvious. In non-autism areas, poor quality research and its harms—its waste of resources, its misleading findings—are vigorously condemned. There is recognition that even the best existing research standards are flawed and need always to be improved. But when it comes to autism, standards have instead been lowered or discarded to accommodate the extremely poor autism intervention literature. Poor standards in intervention research are seen not as harmful and wasteful, which they are, but as what autistics need and deserve. Resources have poured not into improving these abysmal standards, but into making the very poor quality autism intervention literature more powerful and influential.

In one influential paper, the authors devised an elaborate system of autism-specific low standards for evaluating intervention research, then suggested extending this segregated system to other developmentally disabled individuals. The authors did not suggest doing this to the typical population, to people like themselves—this clearly would be harmful and unacceptable.

The segregation of autistics from basic standards in research has also lowered the bar for autistics in other areas: in practice and professional ethics, in public policy, politics, law, journalism, medicine, education, and the list goes on. It has further removed any incentive to fund, conduct, or publish good quality autism intervention research. Yet, the popular effort to impose autism-specific low standards in the area of intervention research can be shown to lack any scientific or ethical foundation.

It is remarkable that while alarming claims about “costs of autism” are everywhere, there has been no concern whatsoever about the high costs, at every level, of autism-specific low standards. What is the way forward? We should listen to what history tells us. We should stop segregating autistics from the basic rights and standards everyone else can take for granted. Then we can see what else is needed.


Michelle Dawson is affiliated with University of Montreal’s autism research group and can be followed on Twitter @autismcrisis


More in the series:
The Lessons of Autism History: by Neurotribes author Steve Silberman

The Lessons of Autism History: by parent and GP Mike Fitzpatrick
The Lessons of Autism History: by autism consultant Cos Michael

James Fitzpatrick teenage and Mike 2

The Lessons of Autism History: by Mike Fitzpatrick

Mike Fitzpatrick, a GP and parent of a young adult with autism contributes to this Autistica blog series examining what we can learn from history in order to guide future autism research.

‘Neurodiversity advocates propose that instead of viewing this gift [autism] as an error of nature – a puzzle to be solved and eliminated with techniques like prenatal testing and selective abortion – society should regard it as a valuable part of humanity’s genetic legacy while ameliorating the aspects of autism that can be profoundly disabling without adequate forms of support.’ Steve Silberman, Neurotribes:  The legacy of autism and how to think smarter about people who think differently, 2015.

Priorities in autism research: basic science or practical interventions?

In his new book, American journalist and author Steve Silberman endorses an emerging consensus, extending from autism activists to autism academics, based on insisting on a rigid dichotomy between basic scientific research, on the one hand, and research into practical interventions likely to have immediate practical benefits, on the other. Silberman echoes neurodiversity activists in disparaging research in the fields of genetics and neuroscience, partly because earlier promises of rapidly transformative effects have not been fulfilled, and partly because biomedical studies are linked to the quest to find ‘a cause and a cure’ (or even to proposals for eugenic ‘preventive’ interventions). He also upholds the demand made by many adult autistic advocates that resources should be diverted into investigations of educational, psychological and social interventions that may ameliorate some of the day to day difficulties experienced by people with autism and their families.

But this argument is based on a false counterposition. Genetic and biomedical research need not be linked to a eugenic agenda, but may have more humane and more realistic objectives. Despite the disappointments following the hype surrounding the human genome project, some progress is being made in a number of areas. Investigating the pathways linking genes and central nervous system pathways and neurotransmitter systems involved in particular patterns of behaviour may open the way towards treatments for many clinical features associated with autism. For example, many people with autism experience problems of anxiety and depression, obsessional and compulsive behaviours; others manifest self-injurious or challenging behaviour; many have epileptic fits. Scientific studies may yield insights into problems of learning disabilities and even into some of the difficulties of social interaction experienced by people with autism.

There can be no doubt that we need more research into many of the practical interventions currently in use for people with autism, from medications to teaching techniques to behavioural programmes. But this should not be at the expense of basic biomedical research which may yield more substantial longer-term benefits.

Michael Fitzpatrick, GP and parent of James, a young adult with autism.


More in the series:
The Lessons of Autism History: by Neurotribes author Steve Silberman
The Lessons of Autism History: by autism researcher Michelle Dawson
The Lessons of Autism History: by autism consultant Cos Michael


Steve Silberman & book cover

The Lessons of Autism History: by Steve Silberman

Steve Silberman, author of the recently released book Neurotribes, discusses how he believes we can learn from what has gone before to shape autism research in the future.

What lessons can researchers learn from the history of autism? To answer that question accurately, it’s crucial to get the history right first. While undertaking the research for my book NeuroTribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently, I was surprised to discover that even the basic timeline of autism’s discovery, reiterated in thousands of textbooks and Wikipedia, was incorrect.

Though Leo Kanner is usually given the credit for discovering autism at Johns Hopkins Hospital in Baltimore in 1943, I learned that Hans Asperger and his colleagues at the University of Vienna were already writing about it insightfully as early as the mid-1930s. Furthermore, Asperger’s conception of autism was much more expansive and prescient than Kanner’s, encompassing a broad “continuum” of clinical presentations, from children with profound intellectual disability and no speech to a chatty assistant professor of astronomy; in other words, the autism spectrum as we know it today. And while Kanner insisted that autism was rare — a bit of speculation that prevailed unchallenged until Lorna Wing and Judith Gould overturned it in the 1980s — Asperger believed that autism and autistic traits are common, and that once you learn to recognize them, you see them everywhere.

Now we know that Asperger was right about the scope and prevalence of the condition he described. Particularly in the United States, however, the notion that autism is a formerly rare condition that suddenly exploded in incidence in the 1990s has lingered in the public imagination, despite the fact that the hypothesis that the MMR vaccine was responsible has been discredited by multiple studies. As a result, much of the research funded by American organizations like the National Institutes of Health and Autism Speaks has focused on hunting down autism’s causes in an ever-lengthening list of candidate genes, de novo mutations, and potential environmental triggers. Meanwhile, less than two percent of the research funded by the NIH and Autism Speaks focuses on improving the lives of autistic adults — and that number is falling, according to a recent U.S. government report.

Though some of this research may eventually result in more effective therapies, the problem with the relentless focus on causation, says John Elder Robison, who formerly served as an advisor to Autism Speaks’ science board and is autistic himself, is that:

“the translational horizon is ten to twenty years out. We need to balance this long-game approach with research that will benefit autistic people and their families now.”

Areas of study that are perpetually overlooked and underfunded include: investigating the incidence of autism among women, people of color, and communities that don’t have good access to health care; addressing problems in sensory integration; developing more affordable methods of enabling communication for nonspeaking autistics; reducing the incidence of seizures (one of the leading causes of death in autism), sleep disorders, and gastrointestinal distress in people on the spectrum; exploring ways of facilitating inclusive education; developing strategies for preparing autistic teenagers to enter the workforce; helping people on the spectrum to live more independently in their communities; probing the connection between bullying, chronic anxiety, and depression; reducing discrimination in employment and housing; and providing more resources to enable families to make informed choices about service providers.

There is much work left to be done.

Steve Silberman is the author of NeuroTribes: How to Think Smarter About People Who Think Differently (Allen & Unwin 2015).

More in the series:
The Lessons of Autism History: by autism researcher Michelle Dawson
The Lessons of Autism History: by parent and GP Mike Fitzpatrick
The Lessons of Autism History: by autism consultant Cos Michael