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News

General practitioners urgently need autism training

by , ,  /  17 May 2017
PIA / Shutterstock
Editor's Note

Spectrum’s house style is to refer to ‘people with autism’ rather than ‘autistic people.’ This article is from our content partner, The Conversation.

Most of us get slightly anxious about going to the general practitioner. What if it turns out that nothing’s wrong? Or perhaps there’s something seriously wrong? theConversation-logoThe Conversation

Despite these minor concerns, most of us are happy to book an appointment, turn up at the practice and talk to a doctor about our health problem. But what if you have autism? What if you have trouble communicating verbally and yet the only way to book an appointment is over the phone? What if your experience of pain is different from that of other people, and you can’t work out whether you need to go to the general practitioner in the first place? What if the sounds and smells of the doctor’s waiting room are too overwhelming for you to even enter the building?

Even though autistic people might have many concerns about going to the general practitioner — concerns that are probably different from ones most people have — at least they’ll be talking to someone with knowledge and experience of autism, right?

The Centre for Research in Autism and Education at University College London recently teamed up with the Royal College of General Practitioners to find out how much general practitioners know about autism, whether they had any autism training and what their experiences were of working with their autistic patients. Shockingly, the results showed that, of the 304 general practitioners surveyed, 39 percent had not received any autism training. What’s more, of the ones who had received autism training, almost 40 percent didn’t find it very useful. It is not surprising, then, that general practitioners also reported having little confidence in caring for their autistic patients. Given that autism affects one in 100 people — more than 700,000 people in the United Kingdom — these are deeply troubling findings.

Tacit knowledge:

To compensate for their lack of training, general practitioners seem to be relying on their own experiences of autism — through autistic family members, friends or colleagues — as a source of tacit knowledge. Yet autism affects different people in different ways. An over-reliance on personal knowledge of autism might lead to doctors having a narrow, idiosyncratic view of autism. This could result in general practitioners missing the signs of autism, especially in people who don’t neatly fit the autism stereotype (such as women and girls). Getting an autism diagnosis is difficult enough, with lengthy delays of around two years for adults and three-and-a-half years for children. As general practitioners tend to be the first port of call for parents or adults seeking help for a suspected autism diagnosis, they play a key role in ensuring that the process of accessing a diagnosis starts smoothly and swiftly.

General practitioners have a duty of care to their autistic patients, who are a particularly vulnerable group. While the latest figures suggest that two-thirds of people will experience a mental health problem in their lifetime, rates of mental health problems are much higher in both autistic children and adults. Autistic people also have higher rates of medical problems such as epilepsy and are more likely to die prematurely.

Respectful, accessible and tailored:

Better services to meet the needs of autistic individuals are urgently needed. Encouragingly, the Royal College of General Practitioners has recognized autism as a priority area and has developed tools and training resources to support general practitioners in their practice. But the need for change extends beyond these doctors. Research from the United States highlights how autistic people aren’t satisfied with their experiences of healthcare more generally. This is partly because healthcare providers (including doctors, nurses and other medical staff) don’t have much knowledge of autism, but also because healthcare providers are often unwilling or unable to make accommodations to overcome some of the specific challenges noted by autistic people.

It’s not clear what the future holds for the British healthcare system. This lack of certainty can be especially challenging for autistic people and their families, who often get a rough deal even at times of relative stability. What is clear, however, is that now — more than ever — autism must be a priority. From the receptionist at the general practitioner’s office to the doctors and nurses working with autistic patients, to the healthcare commissioners overseeing services, everyone must commit to working with — rather than for — autistic people and their families. Ensuring that healthcare is respectful, accessible and tailored to the specific needs of autistic people are the first steps to achieving this goal.

Laura Crane is senior teaching and engagement fellow at University College London. Liz Pellicano is professor of autism education at the university.

This article was originally published on The Conversation. It has been slightly modified to reflect Spectrum’s style.


  • Adam Swierczynski

    I think it is rather a poor display of the state of training in the UK if the article cannot even use person first language. That is the first step in providing a caring experience. PEOPLE with autism NOT AUTISTIC people.

    • Laura Crane

      Thanks for your comment. We specifically chose to use identity-first (i.e., autistic person), opposed to person-first (i.e., person with autism) language, in accordance with the views of many people in the autistic, and broader autism, communities. I won’t reiterate the arguments here, but would direct you to this excellent piece by Jim Sinclair (http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/view/OP1) as well as a research study that highlights how there is no universally accepted way of describing autism (http://journals.sagepub.com/doi/full/10.1177/1362361315588200). It does, however, highlight how, in the UK, the use of the term ‘autistic’ was preferred by many autistic adults and also parents of children on the autism spectrum.

      • Adam Swierczynski

        If we go by the larger body of scientific standards which is considered one of the highest standards http://www.apastyle.org/manual/related/nonhandicapping-language.aspx it is easy to understand why the person comes first regardless of disability. While I understand the sentiment of the first article you have linked, I cannot help but be reminded by the identity problems that stem from similar practices in, say the 12 step programs, whereby taking on the identity of the condition may only be appealing to the loudest minorities of the group to which the title pertains. Internalized self stigma is harmful, and if we look at how this individual may have been called autistic their whole life, it may just be that resistance to change makes such a title desirable.

        Identity is already a problem that stems from theory of mind and abstract thought difficulties common to the condition we call autism. Identity is far larger than performance, it is wholly abstract. Yet, when identity becomes synonymous with disability, the natural inclination is to perform behaviors which support just such an identity, especially in individuals with impaired theory of mind and capacity to explore the abstract. When trying to help equip any person with a disability with the strengths needed to live as independently as possible in the least restrictive environment, new behaviors are modeled and taught to help an individual become self-sustaining. There is no need to “separate” the autism from the person, but having an identity which would resist adopting new behaviors that might be too “normal” and thus be abandoning their perceived “autistic” nature.

        • As an autistic person I am shocked by your reasoning, or really the assumption your argument, namely that to be autistic is totally negative and not “normal” .

          As the book that it would take me to challenge this effectively has already been written I would recommend you read it – Neurotribes, by Silberman.

          In the meanwhile think about natural language, we don’t say people with hetrosexuality, or people with whitness. I have written about this in more detail at http://www.autismmatters.org.uk/blog/category/language

          • Adam Swierczynski

            As someone with a disability and working on a master’s degree in disability rehabilitation, I fully appreciate avoiding the negative implications of any disability. I wish autism could have a wholly positive connotation when people hear the word, as much as I would for any disability.

            Stigma, on the other hand, is subject to a disability being viewed through the lens of the other. This is where things like the dreaded “R” word (retard) make a great example. By saying, person with an intellectual disability, the person is put first and the disability is not subject to being weaponized.

            As someone who frequents message boards often, I am presented with examples where “autistic” and “autist” have become commonplace substitutes to the “R” word, and it bothers me that an entire demographic is robbed of their normalcy by many people’s first interaction with the concept of autism being one of such negativity.

            I also would like to point out that the book Neurotribes is riddled with confirmation bias and availability heuristic errors. It is not realistic to retroactively diagnose people with autism or Asperger’s syndrome because the necessary diagnostic tools were unavailable. I would make the same argument that going through history and assigning Myers-Briggs personality types to historical figures is a misrepresentation of the label. This article raises concerns that I share: http://www.germlineexposures.org/blog/neurotribes-one-step-forward-two-steps-back-for-autism

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