As we continue to align our services with the needs and preferences of autistic individuals, this blog post offers a valuable reflection from an autistic person with lived experience of eating disorders. Through the lens of the Curly Hair Project, the author shares insights on effective resources and provides thoughtful feedback on our PEACE website. This perspective enriches our ongoing efforts to improve and adapt our approach to better support the neurodiverse community.
The majority of literature and resources on autism in any medical or professional setting—if there even are any—are often written by professionals, for professionals. This fails to consider the perspective and perceptions of perhaps the most important viewpoint—that of the autistic person themselves. They have valuable insight and lived experience of autism, which gives way to a unique take on a neurotypical perspective of a condition that is experienced by the neurodiverse. This is all the more important in a neurotypical world, which is an overwhelming, confusing place for neurodivergent individuals.
What differs about the Curly Hair Project website and all the content and resources is that it is written and has been created by a neurodiverse, autistic individual with lived experience of the condition. The content is easily accessible (provided a subscription to the website), relatable, and informative for all audiences, both neurotypical and neurodiverse, whether someone in a professional setting or not. There is something for everyone and multiple formats to accommodate different ways of learning, processing, and understanding information. For instance, as well as written blog posts, there are audio podcast versions in addition to the various short and informative animations and video clips, some of which are even contained within the blog posts. There are also resources and training materials specifically for differing professions, whether that be in schools, a medical setting, or even employers.
Rather than the standard, heavy medical literature, which is often filled with complex terminology and difficult to understand and decipher, the website provides a user-friendly, informative, and interactive platform. It covers a wide range of topics and is constantly being updated with new content and materials. In addition to the information and resources on the website, there is also a collection of books and even merchandise that can be purchased. However, in order to gain access to the majority of the content on the website, there is a small fee to pay for a subscription, of which there are many options to choose from, depending on who is accessing the site. Regardless of the user or subscription purchased, the same content is available to all audiences, and nothing is off-limits. Each subscription also comes with a free autism alert card—a very informative and useful resource.
Autism is a complex condition for which there is still so much to learn, and it is important not to forget about or dismiss the experiences of autistic individuals within medical literature. Autistic people are people, not just statistics or data; hence, there is great value in considering the lived experience. The best way to learn and grow is to work collaboratively, both neurotypical and neurodiverse alike, so as to explore and consider the whole picture without missing out on key perspectives and input. I think the Curly Hair Project website is a resource all people in a professional setting should invest in to help create a wider awareness and understanding of autism, especially in medical settings. It is much easier to understand and learn from than any medical literature, with the additional benefit of being written from the perspective of someone with lived experience, for both the neurotypical and the neurodiverse.
It is important to remember that every autistic person is different, and one size does not fit all. Having a basic knowledge and understanding of the condition, however, will hopefully help professionals to work collaboratively with the patient and individualize treatment to suit their specific needs. We can learn a lot from each other by working together and utilizing resources such as the Curly Hair Project website.
For more information, please visit the curly hair project.
At first glance, the website has a rather clinical feel, which can come across as slightly daunting and intimidating. Whilst the content is informative, it does not necessarily make for very easy reading. It is quite difficult to navigate, with the sections on each page perhaps needing clearer signposting so you know what you are looking at or clicking into more easily. There are blog posts embedded within the page, separating out the information, with a separate section at the bottom of the page specifically for the blog posts. This can be quite confusing and make the information more difficult to process. By having other resources and links splitting up the main body of text, it means you have to search for and try to pick out the information. That said, the page on the website containing all the blog posts is easy to navigate due to the filters, which allow you to narrow the number of posts that appear depending on what you are looking for. Perhaps in addition to this, there could be a specific search bar within the blog post page to allow the user to search for a particular phrase or topic in case none of the filters listed describe the nature of the blog post they are looking for.
On the note of the home page itself, I think perhaps some of the main content and information can be easily missed. It is very clear which section to click into depending on the nature of the person visiting the site; however, this then means people may not scroll down to view the rest of the key information on this page. Perhaps reordering some of the content and information will make for a more informative visit to the site and ensure key facts are not missed. For instance, maybe it would make more sense to place the video and explanation of the PEACE Pathway above the sections asking whether the user is a carer, clinician, or someone with an eating disorder and autism. It would perhaps then make sense to place the resources section with different links for each type of person below these headings. I hope I am making sense; however, this is quite difficult to explain clearly in writing. Talking of which, to me, it seems as though the book and explanation of the PEACE Pathway come together, so I feel it is important to make people aware of this at the same point as explaining the nature of the PEACE Pathway itself. That way, people will automatically be better informed of key content and resources, giving explanation and expansion to the important work of the PEACE Pathway. By making the content on the website flow better, hopefully, it will be more accessible and make for easier reading.
The PEACE Pathway still remains a rather under-recognized, under-appreciated field, despite its importance. Unless in a medical setting, you have probably never come across it, and even then, you might still not be aware it exists until someone points it out to you. The website is not something you’d stumble across by accident unless you really knew what you were looking for. Therefore, perhaps it might be worth considering having merchandise or products people can purchase on the website to help raise awareness of the PEACE Pathway and promote the website/content. In a sense, it is a way of self-advertising, whereby the money obtained through the sale of merchandise can be put towards funding for further research. It is not just about being aware of the PEACE Pathway but understanding what it is about and implementing it. Hopefully, creating more awareness, not just in a medical setting amongst professionals but within the wider public, will help better inform treatment options. The work being carried out through the PEACE Pathway is important, as no two eating disorders are the same, nor should they be treated as such. By adapting treatment to suit the individual, this is beneficial not only to the patient but also to clinicians and any other professionals/people involved in their care. Another benefit of promoting tools/resources to help is that hopefully, it will make them more easily accessible. A few ideas for possible merchandise are listed below:
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