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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

Paperchase Christmas Cards Autistica Fundraising Autism Research

Autistica Paperchase Christmas cards


We are fortunate this Christmas to again have the support of Paperchase who will be donating 50p from the sale of every pack of Autistica branded card packs to our vital research.

There are two designs to choose from, and you can buy instore or online. If you are making the purchase online, why not go via Easyfundraising so that we get up to an  extra 4% on your purchase.

Each pack contains 8 charity Christmas cards. Cards measure 150mm x 150mm. They are available as a 3 for 2 deal.


Winter card

BUY ONLINE: Winter landscape – £4.00 


Retro christmas card

BUY ONLINE: Retro Merry Christmas – £3.50

Baby in brain scan

We owe it to the autism community to base services on world-class research

The value of clinical trials

The key to good services is knowing why they work. In the case of autism, we know very little about what approaches improve outcome for people with autism – outside of every day common sense adaptations. Thus, it is not surprising to find that the autism community rates the innovation of treatments from diagnosis through to adulthood as a key research priority.

The best way to empirically understand whether a treatment works is through a clinical trial. A clinical trial allows for the exclusion of confounding factors which may skew results. An example of a confounding factor is the placebo effect: where an ineffective treatment elicits an improvement (or report of improvement) as there is an expectation that it will be helpful.

Natural development or effective intervention?

Autism is a developmental disability, and research shows that people with autism, like those without autism, generally reach various developmental milestones through childhood. The reaching of these milestones can be claimed as evidence of an effective treatment when they would have naturally occurred anyway.
It’s also important that the aims of a treatment are clearly stated and registered. If not clearly stated, those undertaking the research (academics, clinicians , educationalist, parents, autistic individuals or pharmaceutical companies) can perceive specific improvements as signs of treatment effectiveness when they were, in fact, just random effects.

Effective reporting

Another marker of world-class research practice is reporting. This means that every result of every clinical trial is reported. This can stop an epidemic within research: where only research studies with positive treatment effects are reported – resulting in a publication or reporting bias. That is why Autistica supports AllTrials; a campaign which asks for every clinical trial to be registered and reported.

Making the most of limited resources

The UK only spends approximately £4m/year on autism research, which is minimal when you consider the estimated £32 billion/year cost of autism to the economy in treatment, lost earnings, care and support for children and adults with autism. Given the lack of funds for autism research (particularly in comparison to other medical conditions) it is critically important that every penny dedicated to autism research is spent on the highest quality studies and studies which are based on community priorities.

As John Elder Robison has said, autism research must focus on making improvements in services which can help and support people affected by autism now.

Dr James Cusack, Research Director at Autistica.

Isabel York

Meet the Researcher: Isabel Yorke

Isabel Yorke is one of 4 fellows funded by Autistica at the Institute of Psychiatry, Psychology and Neuroscience as part of our Casting Light on Mental Health project.


What is your research background?

I’m embarking on my PhD after having just completed an MSc at the Social, Genetic and Developmental Psychiatry Centre at King’s College London. emotional symptoms of autism. Before this I spent several years working with young people with autism in education settings.

What attracted you to do research into autism and mental health?

Since working with children and young people with autism in education, I have been intrigued by the condition. I have always been especially struck by the diversity within the group of individuals diagnosed with it, especially in terms of what was holding them back. This has led me to believe that in many, it is the secondary mental health issues associated with autism and not autism itself that may cause the most problems and at the same time be the most treatable. Finding out that this topic was of particular importance to those with autism themselves, has also really attracted me to the field

What are you working on with Autistica?

I’m involved in a project that is gathering data on a variety of environmental factors from a group of children with autism, at various time-points over their childhood and adolescence. Such longitudinal research is very important as it allows us insight into which factors in childhood are important in affecting the mental health outcomes of those with autism, by the time they reach adolescence.

What will your average day involve?

The project is currently in an important wave of data collection, so when I start, I will be meeting families and collaborating with my team on gathering the information required to investigate the variables of interest. This will involve much work before the sessions with families to ensure that everything is set up in such a way that the children and their parents are transitioned smoothly through all the tasks. It will be important to strike a balance between collecting as much valuable data as possible, whilst making the day an enjoyable one for the families who are putting their time and effort into the process too.

Autistica puts families at the heart of everything they do, and this is the reason why we are embarking upon research into mental health: their top priority. How will you involve families and individuals in your research and promote the findings to the wider autism community?

Our research design is based heavily around collecting data from children with autism and their parents, and we wish to keep these families fully informed as to how their data will be used. As well as publishing papers for the scientific community, we want to ensure our findings are made available in a format which is accessible by anyone who is interested, including those with autism and their families. Working with Autistica will be a great help for this aim, as they are experts in providing links between researchers and the autism community.

What impact do you think your research will have on people with autism and mental health issues?

I really hope that by identifying environmental factors which affect mental health outcomes in those with autism, interventions can be developed to change environments which contributing to the onset of disorders such as anxiety and depression. Further, parents, families and schools may be helped to provide environments which tend to promote good mental health, from an early age.

Can you recommend any previous studies that might be relevant for readers who are interested in autism and /or mental health research?

My supervisor, Professor Emily Simonoff, has been involved in tracking the psychiatric well-being of young children with autism and has found evidence that signs of mental health issues can be identified and assessed at an early age. Further developing instruments to assess mental health in young children with autism will aid researchers in understanding how problems unfold and develop over time. For example:

Salazar, F., Baird, G., Chandler, S., Tseng, E., O’sullivan, T., Howlin, P., … Simonoff, E. (2015). Co-occurring Psychiatric Disorders in Preschool and Elementary School-Aged Children with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders. doi:10.1007/s10803-015-2361-5

Simonoff, E., Pickles, A., Charman, T., Chandler, S., Loucas, T., & Baird, G. (2008). Psychiatric disorders in children with autism spectrum disorders: prevalence, comorbidity, and associated factors in a population-derived sample. Journal of the American Academy of Child and Adolescent Psychiatry, 47(8), 921–929. doi:10.1097/CHI.0b013e318179964f

 When you’re not working, what do you enjoy doing?

My passion has always been Irish dancing, which I have done since the age of 9. I am now a qualified teacher and run classes for children and adults! Interestingly, I have been involved in dance clubs at the special needs schools at which I have worked and am very interested in the benefits of music and movement for some people with autism.


Find out more about our mental health project here.
Read about one of our other mental health research fellows here




all trials logo

Autistica signs AllTrials petition

AllTrials is a campaign calling for every clinical trial, to be registered and their results reported.

This call for greater transparency and more accessible information is an initiative that Autistica is proud to support. Currently approximately only half of all clinical trials ever conducted have reported their results, thousands more have never even been registered This lack of access to information could lead to poor decision making surrounding treatment of patients, missed opportunities for new medicine and many trials being needlessly repeated.

At Autistica we expect all trials that we fund to be registered and reported, and will include this as a requirement in all grant awards from now on. Developing treatments to support people on the autistic spectrum from diagnosis through to adulthood is a priority for the autism community. Bearing this in mind we need to ensure that all studies are clearly reported to be able to achieve maximum impact. The information gained from clinical trials being clearly reported and made readily accessible will enable autism research to improve clinical practice as effectively and efficiently as possible.

Autistica is committed to making our science accessible to the autism community. This is why we circulate lay summaries of the findings of our funded studies as widely as possible and why we actively encourage our researchers to do the same. Increased accessibility and availability of the findings from clinical trials will only improve clinical practice which is why Autistica is proud to support the endeavours of the AllTrials campaign.

You can find out more about the AllTrials campaign here: www.alltrials.net

If you wish to pledge your support for this campaign as an individual, you can sign-up here and join in the discussion on the hashtag #AllTrials