An Interesting View On Autism ... And The Challenges Many Face ? Articles On The Latest State Of Play

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Autistic people are not all superheroes, but we’re not all tragic, either.

Until we’re allowed to tell our own stories, others will continue to tell them based on myths and false assumptions.


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With the return of Netflix’s Atypical for its third season, and the increasingly huge public profiles of neurodiverse figures such as Greta Thunberg, it seems that autism has never been talked about more in the mainstream media. And yet depictions of autism frequently fail those they claim to represent, with dire consequences for autistic people.

There are two mainstream narratives surrounding autism: that it is either a blessing or a curse.

Either you are gifted with savant-like traits (think Rain Man) and excel in areas such as mathematics, or your autism is the reason you are isolated, alone and miserable. When Greta Thunberg called out ableist bullying and challenged assumptions, even she resorted to the “superpower” stereotype. And in the case of media coverage, these two extremes in expectations are sometimes quite literally presented as a dichotomy, with Forbes running headlines such as “Is Greta Thunberg ‘disabled’ or a superhero?” What if it is neither? Or both?

The disability rights movement is founded on the principle of “nothing about us without us”. So it is difficult to see how representation of autism could ever be positive when we are rarely involved or even consulted. Autistic people are being constrained by the expectations and judgments of neurotypical people because we are so rarely the ones given space to talk about autism.

I suspect that is partly due to a belief that autistic people (and disabled people more broadly) cannot speak for themselves. Seldom are autistic people part of the creative teams developing storylines involving autism. Indeed, this was a large problem with Atypical in its first season – none of the writers, directors or producers was autistic, and this resulted in the perpetuation of many stereotypes the community has spoken out against.

What we are seeing in mainstream media is not a true reflection of autism. We are, instead, seeing what neurotypical people think autism is. Savan Gandecha, a YouTube creator and host of #AutismWithSav, told me he agrees that we need to “move away from the stereotypes – that will improve representation in the long run”. Autism is multifaceted, varied and exists on a spectrum, but we never see the diversity of autistic people and their symptoms.

Disability has a 2% representation rate in the popular media, and of that tiny figure, only 5% of disabled characters are played by disabled actors. The idea that this is adequate to represent one of the world’s largest marginalised groups is absurd.

The consequences stretch far beyond simply finding television cringeworthy or uncomfortable to watch. Given that public perceptions of autism are largely predicated on these mainstream portrayals in cinema, television, theatre or books, the consistently poor depictions and subsequent misunderstandings about the condition can be incredibly harmful. Autistic people on screen very rarely engage in behaviours that are seen as more taboo – for example, stimming behaviours such as rocking or flapping – or are seen to have meltdowns, and if they do, it is seen as something to be mocked.

The National Autistic Society reports that 28% of autistic people have been asked to leave a public space because of behaviours associated with being autistic, and I suspect that many of these people are adults. The charity’s study also shows that autistic adults think they are judged to be strange (84%), shy (70%) or antisocial (69%) and that people stare, tut or actively avoid them. The lack of representation of autistic adults adds to the myth that autism is something that is grown out of, which is just not how developmental disabilities work.

Even in journalism, neurotypical (or allistic, or non-autistic) professionals are commissioned to write and speak about autism, seemingly with little understanding that they are talking about a key part of someone’s identity. Most recently, when Greta Thunberg wrote about her autism as a driving force in her activism, the vast majority of articles about it demonstrated a fundamental lack of awareness surrounding the language autistic people prefer.

When I was diagnosed with autism, I went and looked for examples of autistic people like me – whether they were queer, or women, or also had mental health issues. What I found was a thriving community, operating under the hashtag #ActuallyAutistic. At last, I could see people all over the world expressing themselves honestly about their experiences of being autistic.

Depictions of autistic people as a monolith contribute to a culture in which we only recognise the condition in a small percentage of the people who are autistic. Despite what mainstream media would have you believe, not all autistic people are white, cisgender, young or male; for every four men or boys diagnosed with autism, only one woman or girl is – but that is probably because representations aren’t diverse enough.

Savan concurs that “more representation is needed from other autistic people who are women and girls and … from BAME backgrounds”. Consequently, autism goes unrecognised and autistic people unsupported. We need representation that is made responsibly and with our input. We simply cannot afford for this misinformation to continue, even in the form of lighthearted teenage television shows.

There has been some progress. Hollyoaks cast autistic teenager Talia Grant to play an autistic character and Channel 4’s Are You Autistic? was hosted by, and with the input of, autistic experts, but this is only a tiny shift and one that is hugely outweighed by poor representation.

Autistic people ought to be the ones leading the conversation surrounding autism. But more importantly, allistic people need to listen and create a space in which we can do this. However, that would require an acknowledgment that no amount of well-intentioned speaking on behalf of autistic people will be anything other than ableist.

• Ellen Jones is a campaigner and creator with a focus on LGBTQ+ rights, mental health and disability

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Caroline Stevens : " My son’s experience of autism made me want to fight for change. "

The Conservatives promised better community-based care. Now they must deliver, says the head of the National Autistic Society.


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Caroline Stevens first had contact with the National Autistic Society in 1997 after calling its helpline.

The information she acquired helped her to get a diagnosis for her son Jack, then just over two years old. Stevens joined a local NAS branch, run by volunteers. There, she learned about autism and found practical help and support from other parents following the diagnosis – a time when, she says, “you feel quite isolated and alone”.

Jack was diagnosed with autism, a learning disability, a sensory processing disorder and a sleep disorder. He cannot speak. She adds: “It was very difficult for him growing up, and we experienced a lot of the challenges that many families go through.”

Now Jack is 25 and Stevens is now the NAS chief executive. She arrived in post in November, just after the general election campaign had kicked off. The three main parties’ manifestos all included specific mentions of autism. The Conservatives pledged to “make it easier for people with learning disabilities and autism to be discharged from hospital and improve how they are treated in law”, and promised £74m over three years for additional capacity in community care settings.

Stevens says these are both a priority, given the countless media stories highlighting “the scandal of autistic people stuck inappropriately in mental health hospitals”. The NAS will track where the new money is spent and push for increased funding across the entire social care system, she says. Reviewing mental health law, which makes it “too easy” to deprive autistic people of their liberty, is also crucial. Other Tory pledges include a new cross-government strategy for disabled people, and special educational needs funding. “Our charity will be making sure that these are all taken forward in a way that can help transform autistic people’s lives,” says Stevens.

Commitments made by the last Tory government include an autism awareness campaign, and a new autism strategy for England that will include children for the first time. The NAS expects publication of the strategy in the coming months.

“We want to see a new all-age autism strategy that not only sets ambitious goals for improving support, but sets out an achievable – and funded – plan for reaching them. This is vital to create a society that works for autistic people.”

Stevens’ role is the result of her decision to make supporting autistic people part of her professional as well as her personal life. Her son’s “very high levels of support needs” meant that she “had to fight for pretty much all the support all the way through”. She switched from hospital management to the voluntary sector, and later became chief executive of a pan-disability charity for children and young people.

She realised just how many other people were struggling. “What saddened and disappointed me was that, up and down the country, there are thousands and thousands of families struggling with the lack of services and support. It shouldn’t be like this. What my family had been through gave me the fight and passion to try to change things.”

With almost 3,000 staff and 2,000 volunteers across the UK, the NAS delivers a variety of services, including schools and residential supported living, to autistic people with complex support needs. The other part of its mission is to influence policy and change attitudes towards autism. Awareness of autism has “increased massively” over the years, but, Stevens says, the NAS defines autism as “a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them”.

She cites a recent NAS campaign to increase understanding of what it’s like to be autistic, Too Much Information, but admits that there is “still a long way to go … there is a big job to be done about ensuring that professionals, as well as the general public, have a greater understanding of autism.”

The challenge was laid bare in a recent joint inquiry with the all-party parliamentary group on autism (APPGA), The Autism Act: 10 Years On, which looked at the impact of the landmark legislation for autistic adults in England. The overwhelming picture that emerged was “one of deeply concerning unmet need”, with the support available going backwards. Stevens explains: ““If there is greater understanding around the needs and challenges of autistic people, then professionals will know and understand what services need to be in place as well.”

Only 21% of councils in England are fully complying with the legal duty to provide autism training to all health and care staff. Just prior to the general election, the government announced £1.4m to trial mandatory training for every NHS and social care worker prior to a wider rollout. “That’s not enough, but it’s a start,” says Stevens. Rolling it out nationally would require more resources, she says, and there would need to be clarity on who would foot the costs.

It’s not just training that is crucial, but ensuring that services are tailored to meet autistic people’s needs. What autistic people desperately need are more community-based services, such as day services to avoid social isolation, she explains. “Being stuck at home with nothing to do and no one to see will impact on a person’s wellbeing, and may lead to a ‘crisis point’,” she says. “You need to intervene early.”

Research shows that almost eight in 10 autistic adults will experience mental health problems during their lifetime. The lack of community-based mental health services see many end up in crisis, and a growing number are admitted to mental health hospitals, as it is the only form of care they can access. Often they get stuck there because of that very lack of community-based support. It is, says Stevens, a “vicious cycle”.

Moreover, the definition of autism as a mental disorder within the Mental Health Act means that autistic people can be inappropriately detained in hospitals against their and their family’s will, sometimes for years. A report by the parliamentary joint committee on human rights, published last month, called for the legislation to be overhauled. The government then promised that all 2,250 inpatients with learning disabilities and autism in mental health hospitals will have their care reviewed within 12 months. Stevens says this should be happening anyway.

The NHS long-term plan has a commitment to improve community mental health support and halve the number of autistic people and people with learning disabilities in inpatient settings by 2023-24. Achievable? “If there is a true commitment, then yes, but that needs to be funded and there needs to be action,” says Stevens.

Now the election is over, Stevens is clear there is an opportunity to hold all parties to account on making sure autism is a priority. Stevens’ mission is clear: “To create a society that works for autistic people.”