In beginning our search we found that we needed to include a breadth of different search terms. The terminology used amongst the ASD community has shifted greatly in the last decade. Until 2013, Asperger’s Syndrome was classified as a separate disorder from autism. When the DSM-V launched in 2013, the two were combined into one diagnosis and made into a spectrum ranging from mild to severe. With changes to the DSM-V being relatively recent, we thought their new merged diagnosis might not ubiquitous knowledge for all parents, and many print resources a library may have them as separate. The term is still widely used among the ASD and non-ASD communities, especially if the child got a diagnosis before the current DSM version. Additionally, in 2018, it was discovered that Asperger’s Syndrome’s namesake — Hans Asperger– was not only a Nazi, but a Eugenicist. Medical notes discovered after Asperger’s death revealed that he described symptoms of children with ASD much more negatively than his colleagues, and he travelled in “the highest echelons of the killing system” of the Nazi eugenics program (Czech, 2018). There is presently a lot of debate around whether or not Asperger’s name should be struck from the historical record of ASD, or if keeping his name serves as a memory of the darkness of the syndrome’s past.
Finding sources took various turns as we learned along the way and used each other’s expertise when evaluating them. Selection tools were used to some degree when evaluating resources that deal with game apps that may appeal to Autistic children, and a resource that discusses media representation of people with Autism. The site for suggested game applications was surprisingly thorough, covering privacy concerns, possible issues of data collection, and gave reviews done by other parents who had children using the apps. Upon beginning our search for website resources that were current, easy to use and welcoming for parents, we used Google, DuckDuckGo, Dogpile and Yippy. Each of these search engines provided different results, ranging from specific articles from Yippy to DuckDuckGo and Google providing broader scope results. Dogpile brought in a lot of the same sources as Google, but also a river of advertisements and we stopped using it after a few searches. Google turned out to be very useful, with DuckDuckGo a close second in search results.
Phrases, Keywords and Phrases that worked well are bolded, while some of the others did lead to helpful resources some lead to resources we decided not to use:
- Autism
- Autistic
- Autism/Autistic Spectrum
- Autism (and Autistic) Disorder
- Autism Resources Parents
- Aspergers
- Asperger’s disorder
- Asperger’s syndrome
- Asperger’s syndrome DSM-V
- High functioning Autism
- Spectrum Disorders
- Spectrum Syndromes
- Parents Autistic Children
- Children Autistic Networks (help groups)
- Autism Resources Multilingual
- Autism Resources Blind Accessible
- Autism Resources Deaf Accessible
- Autism Resources Education
- Autism Adaptive Technology
- IDEA Act
We decided to stop our search when we noticed more overlap between the search engines.
After we compiled a list of sources, we began trimming our results list down as subtopics began to crystallize. We each provided summaries of what the e-resources covered in a Google Doc, and filed them under different subtopics we were considering. After we each found about 5-8 e-resources, we began inspecting them for our criteria:
- Age
- Credibility
- Multi-lingual
- Useful for parents
- Contributions by Autistic people
- Ease of use
- Working links
- Quality of other articles and guides on website
- Little to no ads, or asking for donations
As we began evaluating the list, we often encountered better resources through hyperlinks or citations. As a result, our research guide’s final version is composed of around half of our original e-resources we located for evaluation, and about half e-resources we discovered during our evaluation process.
Once a credible site was found, we spent time on it, browsing the type of information it included, typing in search terms, using the navigation tools the site provided, and gaging how easily information was found. Since we focused on resources for parents with children with ASD, we discarded resources that were for adults with ASD. We also discarded resources that were ad heavy or had the potential to spread misinformation. We found a lot of advertisements on websites, notably Autism Parenting Magazine, which had a lot of pop up ads for itself and only three reviews on Amazon. Not only were these distracting, but the high volume of ads made us question the motives of groups and their affiliation with Autism. We also tried to avoid websites that overtly asked for donations. Asking for donations is not uncommon even in reputable resources like Autism Speaks or University of Washington’s Autism Center but we did not want that to be the main focus. Some potential resources were more difficult to evaluate for trustworthiness but we sought to exclude those we felt might be trying to make predatory profits off an already vulnerable population.
Our guide is arranged into four smaller subtopics including Education, Tough Topics (Bullying and Sexuality), Representation in Media, and Support for Parents. These subtopics cover a wide array of topics to reflect both common struggles of ASD families and to cover gaps in content we noticed during our searching process. For instance, we noticed very little specific coverage of sexual health, sexuality, and bullying. While there are a lot of resource lists and listicles about autism’s representation in media, very few were compiled by libraries or behavioral health/ASD specialists or autistic people themselves– and many included representation of characters only implied to have ASD. We also wanted to include other aspects of diversity and representation in our guide. We did this by establishing an evaluation criteria for both available languages and e-resources that feature self-advocates of Autism.
Originally, we had several additional subcategories including Autism and Libraries and Transitions to Adulthood. As we continued our search these categories both fell out of our scope, and we felt only having two or three articles about big topics was not going to be adequate. Transitions to Adulthood was partially merged into the tough topics category– where we saw overlap in topics like sexuality and sexual health. Other subtopics adjacently touched on the subject too, including Organization of Autism Research’s Guide about Navigating the Special Education System– which notes students can stay in the school system until age 21. Additionally, transitions to independent living may not be possible for some children with ASD– or will look very different on case-to-case. Covering this topic would have enough content to fill an entire research guide of its own.
Autism and Libraries provided helpful material for librarians working with ASD, but we found that ultimately it did not serve the needs of our audience as much as it served our own research needs. However, some of the material we discovered related to libraries and Autism did aid our search immensely. The American Library Association’s Library Service to Special Population Children and Their Caregivers Toolkit (2015) was a resource that we cut from our guide purely for space reasons, but its list of search terms for ASD and links to resources helped us refine our web searching, confirm credibility of some of our host sites, and also gave us a better sense of how complicated looking for information about Autism Spectrum Disorders can be for less experienced searchers.
Our search led us to learn more about autism and what needs a family might have when first encountering diagnosis or the possibility of a diagnosis. We chose to include a comprehensive resource that we evaluated all together in order to better understand a resource and its contents. We found that our subject has a large scope and several resources that are beneficial to parents of children on the Autism Spectrum and through our extensive search found a wide range of what is available.
