Wednesday, May 27, 2020

“Our Own Little Worlds”

Tiny World
Photo © Jill at Blue Moonbeam Studio | Flickr / Creative Commons
[image: A wooden gate in a botanical garden, with the Austin skyline
in the background, as seen reflected in a crystal ball.]

Devin S. Turk

As I have become more involved with the autistic self-advocacy movement, I’ve found myself paying more and more attention to how non-autistic populations talk about us. I have often heard my beautiful, vibrant community described by non-autistics with words like “disease” and “epidemic.” Even if it’s not as blatant, the language our wider society uses to talk about autistic people is reflective of a deep-seated discomfort and even disgust with the non-normative. 

One example is the idea that autistic people are in our “own little worlds.” “They’re in their own little world” alludes to the intensely ableist trope of the “mysterious autistic” person, someone who is “trapped” within their “Autism-ridden” body or “locked away”in a brain that “can’t” communicate, empathize, or socially matriculate…as if Autism is a sort of bubble around a “normal” person. Additionally, the word “little” in “own little world” adds infantilization to the mix: “little” is another way to deem a person’s neurology to be childish, and therefore even lesser-than. If I am in my own world, it sure as heck isn’t “little.”

For a moment, let me play devil’s advocate and entertain the idea that there hypothetically could be separate autistic and non-autistic “worlds.” (Just go with me on this one.) Say the autistic and non-autistic mental landscapes actually do exist as opposing habitats, like the North and South Poles at the opposite ends of a planet. 

If this were true, why is the autistic landscape automatically considered less fulfilling than that of the non-autistic? Why is the realm of neurotypicality the baseline standard while the “world” of Autism is devalued and dismissed as disordered fantasy?

The “own world” sentiment expresses the gross assumption that the autistic brain is somehow inherently unhinged from reality, and that there is something deeply wrong with that. Moreover, the phrase implies that we operate from behind some kind of pane of frosted glass: the obviously-autistic person is deemed unreachable as well as unreadable. Our natural responses to the surrounding environmental stimuli (which can include various forms of stimming, echolalia, meltdowns, shutdowns, burnout, etc.) are characterized as symptoms of distorted realities or of pathological detachment. 

But, of course, nothing could be further from the truth. Many autistic people express a heightened sensitivity to sensory input, empathy, or environmental connectedness…non-autistic people just aren’t good at recognizing it.

Here, I am reminded of a video uploaded to YouTube by the late Autistic activist Mel Baggs, titled “In My Language” which has had a profound effect on myself and many others in my community. If you haven’t seen “In My Language,” watch it, and then watch it again. 

I continue to be very moved by Mel’s description of existing in continuous, wordless conversation with surrounding objects, forces, and other beings, and I also relate to it. (However, when I’m around non-autistic people, so much of my energy is allocated toward masking my autistic traits, I am forced to tune-out those conversations. I hope for this to change one day soon, but I digress.)

Even when this is not the case, when an autistic person lacks empathy, is “out-of-touch” with present social norms and values, or acts in a visibly-neurodivergent manner, their personhood remains intact. I wish these were not statements I felt I needed to include in this writing. I hope that they are obvious to every person who interacts with my community, but there are many systems, large and subtle, that aim to undermine the humanity of Disabled people.

So, it bears repeating: Autism does not render a person less worthy of the respect and dignity that our society automatically awards to non-disabled individuals. After all, my community and our “own little worlds” are not the result of my people becoming encased in some sort of Autism bubble…we are simply autistic people. We are not inherently separate from or in opposition to the “real” neurotypical world…But if we were, why would that be a bad thing?

My hope is that, as the autistic self-advocacy movement continues to blossom through and around us, our broader neurotypical peers can uplift our voices, experiences, and expressions instead of dismissing them.

Thursday, May 14, 2020

Finding the Right Speech-Language Pathologist (SLP) For Your Autistic Child

Julie Roberts, M.S., CCC-SLP

Photo courtesy Julie Roberts
[image: Ms. Roberts, a smiling white
woman with long straight blonde hair.]
After your loved one receives a diagnosis of Autism, your physician, school, family members, friends and possibly even total strangers may bombard you with (possibly unsolicited) advice for the next steps to take. One such step your family may actually want to consider is to seek the services of a Speech-Language Pathologist (SLP).

But what is an SLP? They are professionals uniquely qualified to evaluate, diagnose, treat speech, language, social communication, cognitive-communication, and swallowing and feeding disorders in children and adults. An ASHA (American Speech and Hearing Association) certified SLP must complete 400 clock hours of supervised clinical experience in the practice of speech-language pathology during graduate school, and 375 hours of that must be spent in direct client contact.

Once an SLP graduate student has finished the required coursework and supervised clinical experiences, obtained a master’s degree in speech pathology or communication disorders, has passed a national Praxis exam and has completed 36 weeks of full-time professional experience as a Clinical Fellow, only then may they obtain their CCCs (Certificate of Clinical Competence in Speech-Language Pathology).

SLPs also take distinctive graduate coursework unique to their scope of practice, in areas including: Voice Disorders, Stuttering, Motor Speech Disorders, Neurogenic Communication Disorders, Dysphagia, Language Acquisition, Articulation Disorders, Anatomy and Physiology of Speech and Hearing, Childhood Apraxia of Speech, Articulation and Phonological Disorders, Dysphagia in Public Schools, Dysphagia in Infancy, Medical terminology and scope of practice of the medical SLP, Dementia, Pulmonary Issues, and Tracheostomy and Ventilators, Pediatric Feeding, Speech Science: Anatomy, physiology and functional organization of speech. Mechanisms of normal speech production and perception with applications to the clinical setting.

Please know that therapists who are not SLPs in ABA clinics may claim to provide speech and language therapy in conjunction with ABA therapy. Beware: These clinics may have BCBAs and RBTs acting in the role of the SLP, but neither discipline is uniquely trained in communication disorders, language acquisition, AAC and feeding and swallowing. In fact, if an untrained therapist is providing therapy within the scope of practice of the SLP, they may do significant emotional and physical harm to your child because they do not have the educational background and training to determine whether something might be a motor issue, or if your child has accompanying anatomy, and physiology deficits, or if your child has accompanying health issues secondary to feeding difficulties (dysphagia, need for ENT services, a GERD diagnosis, etc.) Additionally, when your child is not physically or cognitively able to do something and a reward/punishment is in place, not only is their physical well-being in jeopardy, but their emotional well-being, too.

Parents should know that an autism diagnosis may or may not include accompanying intellectual disability, and may or may not include accompanying receptive and expressive language impairment. Licensed, certified SLPs are uniquely educated and trained to work with Autistic people in the areas of global language acquisition and expression, total communication (speaking and non-speaking communication and written expression), Augmentative and Alternative Communication (AAC), feeding difficulties and pragmatic language.

As when seeking any type of therapy, the primary goal is first, do no harm. Pro-neurodiversity SLPs practice from mind-set of “Autism Acceptance.” SLPs who practice in this manner do not “treat Autism,” they treat communication delays and disorders, provide evaluations and therapy for AAC use, provide non-behavioral, humane feeding therapy, and provide therapy for articulation, phonological processing, apraxia, voice and dysfluency issues. If your SLP tells you that they will treat your child’s autism, you will want to ask them to expand on this statement to understand how they view Autism, (and subsequently how they view your child/adolescent).

Therapy Models which are ABA derived and therefore not recommended:
  • ABA – all forms; including “new and improved” or “play-based” ABA
  • Verbal Behavior (VB)
  • The Lovaas Approach
  • Pivot Response Treatment (PRT)
  • Natural Language Paradigm (The “old” PRT)
  • Early Start Denver Model (ESDM)
  • Early Intensive Behavioral Intervention (EIBI)
  • ABA Derived Errorless Learning Therapy Models
  • Intensive Behavioral Intervention (IBI)
  • Positive Behavior Support (PBS)
  • Relationship Development Intervention (RDI)
  • Picture Exchange Communication System (PECS®)

Questions to consider when choosing an SLP:
  1. Autism: Does the SLP claim to “treat autism?” A pro-neurodiversity SLP treats the problem your child is having with communication, speech production, feeding, etc. If you SLP claims to “treat autism” you will need to ask them to clarify. Coercing a neurodivergent person to “normalize” through masking autistic traits (eye contact, mandated social scripting, tone, body language, suppress harmless stimming, etc.) is disrespectful and can cause substantial trauma.
  2. Presume Competence: Does the SLP presume competence, or do they predetermine your child’s abilities, especially your non-speaking child or and/or intellectually disabled child or adolescent? The right SLP will never predetermine your child’s potential, nor would they consider standardized assessments as solid evidence for the current level of cognitive or language abilities or future potential outcomes. The right SLP will approach therapy from a strengths-based model, taking into account their client’s special interests.
  3. AAC without Prerequisites: Does the SLP use AAC (Augmentative and Alternative Communication) liberally without gatekeeping, and as a supplement for speaking children? (AAC is very helpful during sensory overload, to communicate when overwhelmed, to ward off or get through a meltdown, to use when spoken communication is too much to handle.) Do they accept total communication? The right SLP will acknowledge and respond to all communicative attempts, including behavior; they won’t insist on one type of communication method, such as speech.
  4. Applied Behavioral Analysis (ABA): Does the SLP use ABA? The right SLP does not force compliance through the earning of snacks, check marks, behavior charts, stickers, access to favorite toys, activities, special interests, or similar. They will completely reject aversion therapy (punishment) for any situation, including the withholding of attention or affection, favored foods, drink, activities, special interests, or objects. Pro-neurodiversity SLPS don’t train human beings like pigeons, chickens, or dogs. The right SLP trusts that intrinsic motivation will guide your loved one’s therapy progress, rather than a system of external rewards (and possibly punishments).
  5. Body Autonomy: Does the SLP respect body autonomy? The right SLP will always ask your child or adolescent permission before they touch them. They will use hand under hand, only when necessary and only with the child’s consent. The right SLP will not enforce “whole body listening,” write eye-contact goals, or insist upon quiet hands. They will not force-feed. They will not suppress harmless stimming and they will look for the reason behind harmful stimming, rather than just attempting to extinguish it. Compliance over the child’s or adolescent’s body, food intake and will is never the goal; if it is, you have the wrong therapist.
  6. Sensory: Does the SLP respect and honor sensory differences? The right SLP will not force children and adolescents to comply with tolerating sensory input that is uncomfortable or distressing. A good SLP will willingly collaborate with an OT to help your child with their sensory issues.  They will heavily advocate for sensory supports and accommodations in all of your child’s environments. The right SLP will understand what a meltdown is, and what it isn’t (a tantrum) and will approach your child’s meltdowns with compassion and empathy.
  7. Neurodivergent Mentors: Does the SLP learn from neurodivergent mentors as to what therapy approaches and methodologies are respectful? Do they keep up with research conducted in partnership with and by Autistic people?
  8. Empowerment: Do they work in partnership with the client and their family to problem-solve? Do they teach self-advocacy and respect self-determination? Do they advocate for inclusion? Do they advocate for supports, accommodations and inclusion in IEPs?
  9. Emotional well-being: Does the SLP put your loved one’s emotional well-being first and foremost? Do they stop what they are doing when your child indicates distress, or do they “encourage” them to continue through the distress? Encouraging a child to continue through their distress can trauma by forcing compliance for the sake of compliance. Does the SLP hear and validate, “no?” Does the SLP try to get to the root of the problem (pain, sensory, trauma, anxiety, etc.) rather than extinguishing behavior? The right SLP will consistently put your child’s emotional well-being above their ability to comply.
  10. Kindness and Empathy: Is the SLP kind and empathetic? Do they truly believe that all children do well when they can? If your SLP uses words like: “child is manipulative,” “exhibiting maladaptive behavior,” “need to break the behavior,” “extinguish the behavior,” “desensitizing the child,” or similar, RUN.
Some SLPs may balk, becoming offended or even defensive as you ask these questions during an initial consultation. These are not the SLPs for your family. An SLP who practices with a pro-neurodiversity model will welcome your questions, and they will partner with you to empower your autistic child or adolescent along with your family. The right SLP will help your loved one meet their therapy goals while always using empathetic and respectful therapy practices.