A New Community-Created Resource: SLP MAPs

by Affect Autism

This Week’s Guest

This week’s guest is Amanda Binns, a clinician scientist who has her PhD and is also a Speech and Language Pathologist. She’s currently the co-lead at Holland Bloorview Kids Rehabilitation Hospital of a student-led environment designed to support autistic children and families across the province of Ontario. She’s also an assistant professor at the University of Toronto and an adjunct researcher at Western University. She’s with us today to introduce us to the new MAPs (Meeting the needs of Autistic People) resource designed to support Speech Language Pathologists (SLPs) who are working with autistic clients and their families.

Impetus for the New MAPs Resource

This work stems from the need to support Speech and Language Pathologists (SLPs) across the province of Ontario as the new Ontario Autism Program (OAP) that rolled out now includes the funding of SLP services. Amanda’s team went to the literature to see what guidance documents exist for SLPs. Her student, Lauren Choi, did a systematic review of guidance documents out there and there were only a few documents offered by major organizations including the Royal College of Speech and Language Therapists (RCSLT), the governing body for SLPs in the UK, one in Australia, and one in the United States by the American Speech-Language-Hearing Association (ASHA)

There were gaps in the existing documents. They weren’t created in collaboration with communities, Amanda reports. There may have been families or autistic individuals who could look at the finished product and give their input, but Amanda’s team wanted to align the values of SLPs with the values of the community and create the document together. They wanted a document that would be implemented and usable and that would align with what the community said they wanted, versus something that is read then sits on the shelf.

Who Created the MAPs Resource?

A partnership panel was formed that included SLPs from across the province, SLPs in other provinces in Canada because there is a gap in the resources across Canada, and they wanted the resource to be applicable across Canada, family members of children from preschool age to teens, and autistic community members. The partnership included a range of perspectives. This group informed some of the research that was done and the guiding principles that were drafted. Heterogeneity exists in all of these groups and Amanda says that the team wanted all of them represented. 

A survey was launched in Ontario and across Canada and they heard back from families and autistic individuals. They also conducted interviews about accessing SLP services, what was valued in those services, and how SLPs could help support clients. The guiding principles they came up with are shared on the website in the first draft of the document, and Amanda says that they hope to continue to grow the resource and collect feedback as well on what could be developed going forward.

How was the Project Funded?

This free resource was funded by the Ministry of Children, Community, and Social Services Ontario Autism Program Workforce Capacity Fund. Janice Oram Cardy, PhD and Amanda Binns, PhD co-led the project through Western University. A broader team of clinicians, families, and autistics helped make this work. They also had community partners. Clinicians in the field helped as well. The lead of the steering committee was Speech and Language Pathologist and parent of an autistic individual, Cindy Harrison

Other partners included Speech Audiology Canada (Canada’s version of ASHA), Holland Bloorview Kids Rehabilitation Hospital, the University of Toronto, the Centre for Advancing Collaborative Healthcare & Education (CACHE) and education through the University Health Network (UNH). Amanda adds that Dr. Stella Ng and Farah Friesen really brought a lens of health profession education to the creation of this document.

Meeting the Needs of Autistic People (MAP)

The new free to download MAPs resource is not just a document, Amanda explains. They tried to infuse best practices to get clinicians to think about how they are implementing the recommendations and what they can do to reflect on their practice of how they are implementing it, rather than just having the document sit on the shelf. The goal was for it to be actionable in the field, Amanda asserts. When creating this document, they focused on harnessing the collective wisdom of community SLPs, researchers, autistic individuals, and parents to create what they hope will promote more equitable services for families across the province, and will align the values that SLPs are integrating into their work with what is of value to the autistic community and their families.

Amanda says that they looked at supporting more of the marginalized communities where the attention hasn’t necessarily been focused in the past. Within this guidance resource, there is a section on gender differences, for instance. There’s unique aspects of doing assessment on gender-diverse individuals, Amanda explains, that they wanted to attend to, and they wanted to integrate all forms of knowledge. They integrate the evidence-based from the field, from clinician expertise, and from those with lived experience. It’s a triangulation of all of this information to share the best evidence and guidance for SLPs at this time, she says.

On the website, you’ll find access to the team who contributed to and supported the roll out. There are some integral to the project who did not want to be on the website as well, Amanda shares. The Resources section  gives a high-level overview of the MAPs resource. There’s guidance resources, there’s pocket guides, and information about the development and process where the research informing the document is housed. The guidance resources includes 11 different guiding principles co-created by the team and individuals participating in this work. The Pocket Guides are more of the implementation tools. They will continue to build and add to these. 

The 11 Guiding Principles documents

You can download the free full Guidance document that includes all 11 guiding principles, or you can download each of the 11 guiding principles individually if the full document is too overwhelming, Amanda points out. They cover things like ‘Strengths-Based Neurodiversity-Affirming Assessment & Support Planning‘ approaches (1st Guiding Principle), attending to the language we’re using (2nd Guiding Principle: ‘Inclusive and Strengths Focused Language‘) in our report-writing and with families, and in the community, because we know that the language we use can shape perception of how others view autism, Amanda asserts.

I gave my example of that. It wasn’t an SLP, but a developmental pediatrician at a developmental assessment who wrote in my son’s report, “I found the client very difficult to assess.” which infuriated me because it put the blame on my son versus her taking responsibility for the lack of knowledge of how to connect with my son. A more inclusive and strengths-focused way is more desirable. It’s not all about the child, Amanda says. The child is interacting with an environment that wasn’t designed for neurodivergent individuals. Let’s think about how we can adjust the environment and our own interaction style that’s impacting how the child is responding, Amanda asserts. We want to attend to the child in the context that they are in.

At the top of the 2nd guiding principle document, Amanda shares that it says, “Informative, empowering, and supportive terms“. She explains that the background and rationale covers the reasons why we would focus on this, which draws from the literature. They also have cultural considerations, she shares. Then there’s a section on putting the principle into practice which could involve asking the client and family what their preferred terms are, but first, checking in. They might not have ideas about what terms they want to use. This could be an opportunity to share about different perspectives out there, Amanda explains.

In one of the Pocket Guides on the Resources page, there’s an ‘Affirming Language Resource‘ that outlines different terms, Amanda adds. Some SLPs may not realize they’re perpetuating ableist terms that they might have learned in their training, Amanda explains. Also, the language that you use might be different when you write a report versus when you write a letter to a teacher to communicate what’s working in therapy, for instance, for how to best support the client’s language needs. Another Guiding Principle is ‘Consideration of Gender Differences in Autism‘, which Amanda says is something that’s not traditionally covered in academic training. How does autism present differently in gender-diverse populations? There’s reflective questions in there as well, she adds, because this process is always dynamic.

The next Guiding Principle is on ‘Evidence-Informed Practice‘. Amanda states that there hasn’t been a lot of specific research on how SLPs support autistic individuals and their families. How do we think about that? A survey respondent shared that evidence-based practice can be tricky, especially when those defining what evidence is are not those receiving the services. Parents might view compliance as evidence, while autistics might have different parameters defining what evidence is. Which voices do we prioritize as parameters for evidence? There might not be an answer, but we can ponder this and think about the voices and how they apply to the broader community. Checking in with these questions allow us to provide more nuanced and tailored, individualized supports for clients and families, Amanda explains.

The Guiding Principle on ‘Accessible Care‘ was mostly created with research out of McMaster University in Hamilton, Amanda says. It looks at what will help make services more accessible for families and how SLPs can be flexible in the ways we offer services. As the Ontario Autism Program rolls out, Amanda says it asks how SLPs are making sure that services are available to everyone–not just those in urban centres.

The next Guiding Principle is ‘Trauma-Informed Care‘. Here, Amanda says it’s important to think about the core elements of trauma-informed care that SLPs can keep in mind, rather than expecting them to be mental health professionals. It’s about the awareness that clients may have experienced trauma, even if unintentionally within services they’ve received in the past.

The next Guiding Principle is ‘Meaningful and Enjoyable Supports‘ which is really important. Amanda’s colleague in the United Kingdom has looked at participation in physical activity programs. Many autistic youth weren’t able to participate because they were spending too much time in therapy. Amanda says that while yes, we want therapy to be meaningful and support growth, we also want it to be fun, and autistics want their overall well-being to be supported.

The next Guiding Principle is ‘Partner with Clients and Families‘. Amanda explains that there are different ways of partnering with families and clients and we want to consider how we can include the client in decision-making. Sometimes it can be tricky when there are different views about what autism is. It’s about selecting from different ideas presented and tailoring it to clients’ individual needs, Amanda says.

The next Guiding Principle is ‘Collaborative and Coordinated Care (with other professionals)‘, which is about how SLPs collaborate with other professionals such as Occupational Therapists (OTs). Amanda is currently working with with OT Moira Peña at Holland-Bloorview to design tools to promote communication between SLPs and OTs and they will be adding to the guidance document, which made me ask Amanda if this resource was strictly for SLPs. Some educators (e.g., teachers, EAs) have told her that they found it helpful. Although the funding for this project was to support SLPs, specific to SLPs in the field, many of the guiding principles are applicable to other professions, Amanda states. Some sections might be more specific to SLPs, but the resources can help with shared language with other professions that SLPs collaborate with.

Culturally-Sensitive Care‘ is the 10th Guiding Principle. Amanda shares that perspectives of autism differ in different cultures, so we need to think about that in our practice. Autism is also a culture in itself as you’ll hear autistics use lingo that is specific to autistic communities online, for instance. It is good for SLPs to hold and use these ideas in supporting their clients. And the final principle is ‘Individualized Assessment and Support Planning‘.

Download the Free Resource

To access the free resource, you do have to sign up and create a login. Since the project was dependent on funding, they are collecting data on who this resource is reaching. They would also appreciate input on the value and use of the resource as they hope to continue to get funding to continue the development, dissemination, and implementation of the resource. 

Go to the top of the website to the LOGIN button and Member Content button to sign up for FREE access. Amanda assures you that you won’t be bombarded with emails. You might get an email when new resources are added, such as new pocket maps and feedback is encouraged.

Resources in Progress

There’s a Pocket Guide discussed earlier about collaboration with Occupational Therapists. In addition, there’s an umbrella review (i.e., a review of reviews) underway that looked at SLP services that might be offered from preschool to age 18 within the Canadian context. It’s just one piece of the evidence base, Amanda explains. In addition, there’s a study underway looking at the mechanisms and ingredients in coaching parent-mediated practices. It is exploring how parents are coached and what they are coached to implement to best support their children.

Is there a guidance on types of approaches used?

I asked Amanda if there is any guidance on the type of approach to use, referencing our previous podcast on Developmental Social Pragmatic approaches. Amanda says that the guidance is inclusive of the Developmental Social Pragmatic Interventions, and also includes information on the Naturalistic Developmental Behavioural Interventions, and some Behavioural interventions. However, the umbrella review was focused on SLP-specific services. It provides the evidence to reference. In addition, some other projects are looking at what goals are targeted within these interventions, Amanda shares.

For instance, when you look at the World Health Organization’s framework for addressing comprehensive goals that should be targeted within therapies, one area that’s not universally attended to is the participation outcomes, as per her colleague, BJ Cunningham‘s PhD work. An example of a participation goal might be targeting comprehension and use of the vocabulary aligned with soccer programs (e.g., kick, shoot, score, goalie, pass) so kids can participate with peers in summer soccer programs within their community. You want to consider if the goals are focused on skills-based outcomes (e.g., activities), participation-based outcomes, body structures and functions (e.g., articulation based goals), functions, or environment based goals (e.g., adjusting the environment to fit the needs of the child), Amanda offers.

A study that Amanda’s working on right now will give families more information about the similarities and differences among different interventions/approaches and about what coaching approaches are used to give families transparency in what they’re selecting. There might be descriptions of each intervention available in the community, but the ‘ingredients’ within the interventions are not necessarily compared, Amanda explains. 

Families might be provided with information about the service delivery models (e.g. the intervention is offered weekly, and another might be offered a couple times a week for only a set number of weeks, etc.), but not be provided information about different techniques used to promote social communication within each of the interventions. As the literature base identifying similarities and differences across the interventions is built, the hope is that SLPs can better align selection of programs with family and client needs, Amanda says.

What about the non speaking autistic community?

I had another question for Amanda. A lot of people in the autistic community are non-speaking who are unable to speak verbally or prefer to use text. They might be situationally mute. How does this document address that? Amanda says that the topic is touched on in the 11th guiding principle document on individualized assessment and goal planning. It is such a big topic that it’s one of the pocket guides that needs to be built out because there’s so much information and nuances to think about when supporting clients to use alternative communication and the assessment process for this, Amanda explains. 

In the community, there might be a diagnosis and Picture Exchange Communication System (PECS) tends to be used (e.g., Binns et al., 2022), Amanda says. We know from the research, she continues, that PECS doesn’t necessarily have the most robust research behind it. It is limiting if it’s used in the traditional way. So we wonder how to select the most appropriate Alternative and Augmentative Communication (AAC) tool or device for clients.

I mentioned that parents often feel pressure for kids to speak verbally, but autistic individuals advise to give children AAC as early as possible so they have time to learn to communicate in the way that suits them best. Amanda replied that SLP Valerie Wells talks about using other low tech options. We don’t have to move to the high tech right away, Amanda says. PECS is the most prevalent low-tech device, yet there are many other low tech options that may offer more access to flexible communication (e.g., activity boards).

The MAPs Guiding Resources will provide information on low and high tech options SLPs may use. As technology is continuously updated, they will rely on input from the community as new resources are found. It’s a collective process, she says.

This week’s PRACTICE TIP:

This week let’s look at the guiding principles on the MAPs resource and think about how they apply to us. 

For example: Think about which principles apply to you in your practice, or in your family, and consider providing feedback to Amanda’s team on what was helpful, and what they may have missed.

Thank you to Amanda for taking the time to review this helpful new resource for Speech and Language Pathologists in such detail and giving us the rationale behind it’s community-driven creation. I hope that you learned something valuable and will share it on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below.

Until next time, here’s to choosing play and experiencing joy everyday!

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