Learning Outcomes
After this course, readers will be able to:
- Define the term neurodiversity.
- Describe relationship of neurodiversity to the disability movement.
- Identify strategies to improve their clinical practice using the concept of neurodiversity.
Today we're talking about neurodiversity and speech pathology. Specifically, we're going discuss some terminology, how neurodiversity relates to autism and the history of autism, discuss clinical strategies, and demonstrate how to apply neurodiversity to practicing as a speech pathologist.
Introduction
I am a practicing speech pathologist and I've also been involved in the disability community for much longer than I've been practicing. I really love being a speech pathologist and most of my background is in pediatrics. But prior to that, I worked at several recreational camps for children and adults with disabilities, have volunteered at Respite Nights for children with disabilities and have been involved in that community. I've always been really interested in not only the clinical aspect of speech pathology but also the impact that speech pathology and other treatments can have on children and families as well as adults who have disabilities and what that looks like from a more holistic perspective.
Terminology
I know this can be a little dry and seem a little theoretical, but it is important to discuss terminology at the outset so that we are working from shared definitions when discussing various concepts.
Disability
First, I want to talk about disability and what that means. As SLPs, we all work with people with disabilities, for the most part, and it is easy to breeze past the word and think, “Oh, yeah, so-and-so has a disability or this diagnosis is a disability.” But, it's important to take a step back, especially when we're talking about this topic, and think about what disability really means? What does it mean to clients who may have a disability? What does it mean to people who do not have a disability? There are a lot of different definitions and the term means different things to different people.
The definition I am sharing is from the World Health Organization which considers disability to be an umbrella term that covers impairments, activity limitations, and participation restrictions. They provide a breakdown of each of those pieces. An impairment is considered to be a problem in body function or structure. I like to think of that as a child who has an articulation impairment. The impairment would be the difficulty with the function of the articulators. An activity limitation is a difficulty encountered by an individual in executing a task or action. In the artic example, maybe it is difficulty pronouncing a word or using a sound correctly in a sentence. A participation restriction is the problem experienced by an individual in involvement in life situations. In this same example, think about difficulty communicating to a peer or in class, or some kind of social restriction related to embarrassment of a mispronunciation. That is a simple and speech-related example of what that can look like.
Models of Disability
Models of disability are different ways of thinking about disability and there are many models. If you look at the disability studies literature, there are about ten. But the two that are talked about the most and apply to speech pathology are the medical model and the social model. This can be a controversial topic because not everybody agrees with a specific model. But, it’s important as healthcare providers that we are aware that both models exist.
Medical model. The medical model considers that any difficulty a person experiences related to their disability is the result of the impairment itself. For example, consider someone who is paralyzed and uses a wheelchair. Any difficulties they experience navigating their world because they're in a wheelchair would be considered the result of the paralysis or the difficulty walking. Therefore, in order to become less disabled, the problem would be to fix that paralysis in some way or provide some other mode of transportation.
This is the perspective that healthcare providers are often trained in, because we are working in a healthcare setting. Especially if you are a speech pathologist, your job is to evaluate and identify a problem and then treat it. So, it makes sense that often the medical model is the one that people are more familiar with especially individuals who are steeped in the medical environment.
It can often apply to school settings, too, because of the way speech pathologists are often trained.
Social model. This model states that difficulties a person with a disability may experience are the result of society's reaction to the impairment. Using the example of a person who uses a wheelchair, any difficulty they experience navigating their world would be the result of society's failure to provide an accessible community, or provide ramps or other ways for that individual to navigate things safely and easily.
The challenge here, as the social model holds, is not necessarily the disability itself but how society reacts to it or fails to react to it, and that society should accommodate and accept the disability. Again, this model can be controversial. Some people who really believe strongly in a social model will even go so far as to say that disability is created by society. Everyone is different and has different strengths and weaknesses, and disability is really the result of society's reaction to that. Personally, I fall somewhere in between these two models. But, as a practicing SLP, it's important to be aware that they both exist. I find, in my practice, I end up borrowing from both of them. But I think it is important to realize that there are people who are firmly in both camps.
Neurodiversity
Much of what neurodiversity is pulls from the social model. What is neurodiversity? This term was coined in the late '90s by a sociologist from Australia named Judy Singer. She, herself, is on the autism spectrum. I believe she published a dissertation that was partly on neurodiversity, but it was really popularized by a journalist named Harvey Bloom, who published on the topic. The first time this was appearing in the popular press was from Harvey Bloom in "The Atlantic" in 1998. He stated that, "Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general. Who can say what form of wiring will prove best at any given moment?"
Additional language from that time states, "Cybernetics and computer culture, for example, may favor a somewhat autistic cast of mind." So even though that's not necessarily the way we would phrase that now, and we have a different view of the internet and computer culture, what he's saying is that there's not necessarily one correct or right way to think or one right way to be. That really captures what neurodiversity is. It's the view that everyone has differences, and those are to all be accepted. It's not necessarily that there is something “normal” and something “abnormal”.
That concept plays into the idea of, “What is a disorder and what is a difference?” especially when we are in a field where we are often required to diagnose people. In our training, this disorder versus difference piece comes up in terms of language delays or differences, in terms of articulation etc. But it's also good to think about it in terms of other diagnoses like autism.
Neurodiversity also relates to universal design. Universal design holds that we can design workplaces and schools and communities to be accessible to all people.
In this ideal world, we wouldn't need accommodations specifically for people with disabilities, rather the world would be accessible to them. There's an organization called the Centre for Excellence in Universal Design in Ireland, and they have a website that defines a lot of this very clearly. They say, "Universal design is a design and composition of an environment so that it can be accessed, understood, and used to the greatest extent possible by all people regardless of their age, size, or disability. Environment should be designed to meet the needs of all people who wish to use it. This is not a social requirement for the benefit of only a minority of the population. It is a fundamental condition of good design. If environment is accessible, usable, convenient, and a pleasure to use, everyone benefits. By considering the diverse needs and abilities of all throughout the design process, universal design creates products, services, environments that meet people's needs." This is something to keep in the back of your mind. Of course, not all of that relates directly to speech pathology, but when we're working with people who may consider themselves neurodiverse, it's important to understand that there is an idea out there that we can kind of make strides to make everything accessible to people, whether they have a disability or not.
Next, I want to discuss how this applies more directly to speech pathology. One reasons it's important for SLPs to be aware of neurodiversity and to know more about disability in general is because we still commonly treat diagnoses that are relevant in neurodiversity. Autism is an example that will be highlighted throughout this course. However, neurodiversity can also apply to people with learning disabilities, people who stutter, hearing loss, language disorders, etc. Because we're often seeing children and adults as our clients who fall into these categories, it's important that we're aware of this.
This falls into that “disorder vs difference” piece. How do we treat people who consider themselves neurodiverse, or who are aware of this movement, or who have developed some of these theories or opinions? This applies directly to diagnosis and treatment.
How and when should we treat and evaluate children and adults? There is a podcast called "StutterTalk." If you haven't checked it out, I highly recommend it. I have not, specialized in stuttering, but it’s interesting to hear the thoughts that are shared on this website. They have a series of podcasts that are entitled "Should SLPs Treat Stuttering?" Several podcast episodes include licensed SLPs, some of them who stutter and some who don't, talking about the speech pathologist's role in stuttering and whether or not stuttering should be treated. That’s just an example of how this topic can be controversial. Some SLPs feel strongly that it should be treated and some people who stutter feel strongly that it should not. I would recommend, checking out that podcast series as an example of a different way of thinking about speech pathology as it relates to this neurodiversity movement and the social model.
Of course, it's important to remember that we all have constraints in our work settings. So, some of this information we can take into account when we're treating and practicing, but I know that every work setting has its own constraints and requirements in terms of diagnosing and treating.
History of Autism
The reason for focusing on autism in this course is because the autism community has really owned the term “neurodiversity”. As I said early, Judy Singer, who had autism, coined the term and many people who have autism identify very strongly with this term.
I recognize that the term can apply to others and we will talk about that. I also understand that autism is such a spectrum and can present so differently in people. There have but some criticisms of neurodiversity from people who say, “Well, that's really easy and all fine and good to say that everyone's different. That we should accept everyone when you're talking about an adult with autism who is considered high-functioning or has a lot of language and cognitive skills and is able to live independently or function well day to day. But it may not be as applicable for someone who has really severe impairments or is considered nonverbal.” I recognize that the distinction is important. I'm not saying that neurodiversity does not apply to people on the spectrum who have more challenges as a result of their diagnosis. I think it can apply to everyone. But I think it's also important to be realistic about the fact that people with autism can have really different skills and different functioning levels.
I want to quickly review the history of autism because it's important to understand all of this in context, especially because the autism community has been so active. In 1943, there was a paper published by Kanner who sort of pioneered the way of identifying children who were considered to be on the autism spectrum. Prior to this, we did not have a word for it. There were people who were presenting in this manner, but there was no consistent diagnosis or awareness that this was a group of people who were presenting in a similar fashion.
Directly after that in 1944, Hans Asperger published a similar paper that was identifying similar types of people who had more language and cognitive skills. The term Asperger's obviously came from his last name and was kind of the beginning of some awareness of autism. Of course, it looked very different from what we have now.
In 1949, a theory came about called the refrigerator mother, sometimes called frigid mother. This was the idea that autism was caused by something in the environment, specifically how the mother of a child with autism was treating the child. This posed the idea that a mother was withholding intimacy, affection or emotional connection in some way, which caused the autism. You can imagine how damaging that could be to families, specifically mothers, who were concerned that they were causing autism in some way.
Then in 1952, we start moving towards a more consistent diagnosis of autism. At that time, it was called childhood schizophrenia and was officially listed in the first edition of the Diagnostic and Statistical Manual, the DSM, which is still used to diagnose autism and other psychological disorders.
In 1964, Lovaas started to develop behavioral therapy targeted towards children with autism, which is now called applied behavior analysis, ABA. Obviously, this is something that is still really prevalent in autism treatments.
In 1980, the third edition of the DSM, changed the term to infantile autism. At that time, there was still a huge focus on children with autism that we're starting to move away from now. Then in 1991, autism was entered as a special education category in the school so you could qualify as having a disability through that category.
In 1999, Judy Singer coined the term neurodiversity. And in 2009, the incidence of autism really started to take off. At that time, the CDC published the incidence to be one in 110, which was up from one in 150 in 2007. It increased again in 2012 to one in 88.
In 2013, autism subcategories in the DSM-4 were combined in the DSM-5. This was a big deal in the autism community for some people, specifically those who formerly had a diagnosis of Asperger's. There were a lot of people who strongly identified as having Asperger's or being an “Aspie” and being part of that group. When the DSM changed, Asperger's was absorbed into the term autism and there was no longer that distinction. There was some uproar about that in some communities. So, some people will continue to refer to themselves as an Aspie or having Asperger's, even though that diagnosis no longer technically exists in the DSM.
Finally, in 2016, the autism incidence increased again to one in 68 children and that is where it's holding today.
