Nursing Notes with Nurse Daniel

Sleep (how to fall asleep, stay asleep and wake rested)

Wed, 22 Feb 2023 10:35:12 GMT

Guidance for getting better rest

Apps

Self-contained CBT-I (cognitive behavioral therapy for insomnia) app. It offers science-backed recommendations for improving sleep. I-Coach app: https://www.ptsd.va.gov/appvid/mobile/insomnia_coach.asp

Video/Audio

Calming podcasts for sleep (some are people telling calm bedtime stories, others are nature sounds or other calming sounds): https://www.sleepfoundation.org/best-podcasts-for-sleep

Using "color" noise to block out disturbing sounds: https://www.webmd.com/sleep-disorders/pink-noise-sleep#:~:text=One%20recent%20study%20found%20that,horn%20honking%2C%20or%20someone%20snoring.

American Sleep Foundation playlist of sleep sounds (white and pink noise): h ttps://www.youtube.com/playlist?list=PLJ84rbBsD_NCtmGCK83T-F0tCFZt1cHo1

Insomnia meditations (min 30 minutes to max +8h): https://www.lifehack.org/844530/best-guided-meditation-for-sleep

Reading/Learning

The link between trauma and sleep: https://www.sleepfoundation.org/mental-health/trauma-and-sleep

Guideline for "how much sleep is enough": https://www.sleepfoundation.org/how-sleep-works/how-much-sleep-do-we-really-need

Learn about the mechanics of sleeping (including a printable sleep tracker): https://www.nhlbi.nih.gov/health/sleep/how-much-sleep

Overview of non-medication and medication treatments for insomnia: https://www.uptodate.com/contents/insomnia-treatments-beyond-the-basics

Sensory needs

Wed, 14 Dec 2022 11:19:57 GMT

Suggestions for sensory accommodations

Sensory sensitivities and preferences are common in neurodivergent individuals such as Autistic or ADHD folks. The below tips and suggestions have been created from occupational therapy and sensory treatment plans. When considering expanding your sensory capabilities, be sure that you're in a stable mindset so that you feel less overwhelmed. Start slow and "microdose" your sensory experiences; trying to change too much at once can be uncomfortable or lead to a meltdown.

Individuals who are “sensory-avoidant” experience a decreased desire to seek both familiar and new sensory experiences. They may feel easily overwhelmed by many types of sensory input and may be hyperresponsive to them. Exploring sensory experiences in a calm and relaxed setting slowly over time can allow you to expand your ability to tolerate new sensory experiences. These individuals may experience increased distractibility and discomfort when presented with intense stimuli.

For hypersensitive individuals, try:

Taste/Smell

Explore new foods, ask friends to introduce you to restaurants or foods you've never tried
Try out scented products (lotions, soaps, shampoos, aromatherapy); Find scented products that you like and utilize them regularly.
Utilize unscented products as appropriate (shampoos, lotions, cleaners)
Identify flavors and ingredients that you prefer and incorporate them into daily meals
Introduce new foods and smells gradually
Ask for sauces and dressing on the side

Movement (proprioception)

Pursue new physical activities such as (bowling, aerobics, dance classes)
Change the order or technique you do your daily routines (like morning hygiene or workplace tasks)
Attend to how your body feels when you are moving
Use rocking chairs for calming effects
Limit the number of steps when learning a new movement activity
Select movement activities that allow you to keep your head upright and/or maintain a consistent speed (bike riding). Movements with multiple components (basketball for example) can feel more uncomfortable than movements that keep your body in a stable position.
Seek out the stairs when in the community, as elevators, escalators and high places may be uncomfortable
When involved in physical activities, schedule breaks as needed
Incorporate routine and repetition in movement activities
Place your most frequently used objects within arm's reach in cabinets and drawers to avoid having to bend over

Visual

Consider trying new colors in your environment (wardrobe, school supplies, bedroom décor)
Visit a museum
Rearrange your furniture
Use systematic methods of visual scanning (left to right, top to bottom)
Cover or visually block out information, reduce clutter.
Organize drawers, closets, etc. so that it is easy to find what you are looking for
Periodically close your eyes to decrease visual stimulation
Wear sunglasses when appropriate
Use dim or natural lighting

Touch

Incorporate textures in clothing and objects
Take a warm bath using a bath mitt, loofah sponge, or textured washcloth
Use deep-pressure rather than light touch
Wear clothes that are heavy or weighted
Wrap yourself in a blanket; Use lots of blankets or heavy comforters on the bed
Explain your need for personal space to others
Select fabrics that don't irritate your skin or styles that are not constricting
Position fans/vents so that they are not blowing directly at you
Wear gloves when cooking, gardening, etc.

Activity and Energy Level

Spend time in the natural environment (parks, lakes, hiking trials)
Cook something from scratch
Vary the order in which you go about your daily routine
Take opportunities to engage in safe social interaction
Incorporate breaks and time-outs
Look for smaller, less crowded, more organized stores to do your shopping at
Use self-cues to stay focused—talk aloud or to yourself when executing a task
Make a plan before starting a task
Break tasks down into smaller parts
Identify the steps and important features that need your attention
Put materials in sequential order (line them up in the order you will use them)
Write out steps to a task and check them off as you complete each one
Avoid community areas during crowded, busy times
Maintain consistency to reduce disruptions
Establish routines that are comforting and supportive
Find quiet places for alone time
Find opportunities for small groups or one-on-one interaction
Ask to sit individually on the outside when in a large group setting

Auditory

Play music while going about daily activities
Read aloud to someone or listen to books on tape
Limit the amount of information or steps that are provided at any one time
Reduce the volume or amount of auditory stimuli
Take notes and ask for written handouts to supplement verbal information
Participate in group discussions to help maintain focus (rather than only listening)
Diminish background noise/conversation, turn off the TV/music
Go to a quiet area when you really need to focus
Use white noise or calming sounds to drown out distracting noises
Use ear plugs

Hyporesponsive

Individuals who are sensory seeking may find that activities and environments do not provide the necessary intensity or variability of stimulation to enable sustained attention to performance. They are often under-responsive to sensory stimuli and need more intensity input to register a specific response. These individuals often encounter slowed response in reacting to low intensity or rapidly changing stimuli.

Taste/Smell

Incorporate unfamiliar foods
Use extra care when drinking or handling hot liquids
Ensure smoke detectors are present and working
Chew gum or eat mints when feeling restless
Use scented lotions, soaps, etc
Wear perfume, cologne or body sprays
Use spices, hot sauce, etc to add to your meals.
Try new foods frequently

Movement /safety

Use weights or other forms of resistance paired with movement tasks
Use visual cues or visual demonstration to support movement activities
Add visual markers or cues for steps, doorways, etc.
Place anti-skid bathmats in the tub/shower
Wear non-skid shoes
Make sure pathways are clear
Incorporate physical movement to activities
Engage in a physical activity before any thinking task
Select movement activities that allow changing speeds or bending over

Visual

Make visual cues more salient—underline, bold, highlight and use color for visual directions, school work, schedules, etc.
Label drawers and cabinets
Take notes so that information can be reviewed and processed later
Place important everyday objects in an obvious and consistent location
Use bright colors, and bold shapes and forms
Use bright lighting
Look for environments that have a lot of visual interest and activities

Touch

Use visual cues to notice when things are touching you
Ask others to let you know if you are getting too close
Pay attention to weather reports and temperature to determine appropriate dress
Choose activities that allow tactile input from your environment (examples, crafting, gardening)
Select clothes, blankets, towels with varied textures
Go barefoot
Use textured lotions and creams

Activity and Energy Level

Use lists, reminders, calendars as reminders and cues
Write something down or talk it through to another person before executing a task
Seek out group activities
Find opportunities for self-expression (drawing, dancing, painting)
Find new ways to complete familiar tasks
Try to find a way to add something new to your daily routine (take a new route to work, try something new, change the order of two tasks etc).

Auditory

Ask others to repeat information as needed, see if you can record classes
Ask for verbal information to be in written form, or take notes when necessary
Use an alarm on your phone for reminders
Incorporate sounds into daily activities (play music while working)
Use background noise
Find leisure activities where the environment is rich with auditory stimuli (bowling, sporting events, walking in nature)
Attend concerts or other events that provide sounds

Reading List

Wed, 09 Nov 2022 07:12:58 GMT

Books and other references to read

The Queer and Transgender Resilience Workbook by Singh [ https://www.newharbinger.com/9781626259461/the-queer-and-transgender-resilience-workbook/ ]

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A Radical Guide for Women with ADHD: Embrace Neurodiversity, Live Boldly, and Break Through Barriers by Solden and Frank [ https://bookshop.org/p/books/a-radical-guide-for-women-with-adhd-embrace-neurodiversity-live-boldly-and-break-through-barriers-sari-solden/12519937?ean=9781684032617 ]

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Living Independently on the Autism Spectrum by Lynne Soraya [ https://bookshop.org/books/living-independently-on-the-autism-spectrum-what-you-need-to-know-to-move-into-a-place-of-your-own-succeed-at-work-start-a-relationship-stay-safe/9781440557644 ]

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Autism in Adults by Luke Beardon [ https://bookshop.org/books/autism-in-adults/9781529375411 ]

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Camouflage, The Hidden Lives of Autistic Women by [ https://bookshop.org/books/camouflage-the-hidden-lives-of-autistic-women/9781785925665 ]

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The Divergent Mind by Jenara Nerenberg (targeted toward ND women, a decent intro book.) [ https://bookshop.org/books/divergent-mind-thriving-in-a-world-that-wasn-t-designed-for-you/9780062876805]

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An Adult with an Autism Diagnosis by G. Drew [ https://bookshop.org/p/books/an-adult-with-an-autism-diagnosis-a-guide-for-the-newly-diagnosed-gillan-drew/9968462?ean=9781785922466 ]

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How to Deal with Neurotypicals [ https://bookshop.org/books/how-to-handle-neurotypicals-a-field-survival-guide-for-the-neurodivergent/9798680457535 ]

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Our Socially Awkward Marriage by Tom and Linda Peters (CW for some outdated language) [ https://bookshop.org/books/our-socially-awkward-marriage-stories-from-an-asperger-s-relationship/9780984223039 ] (this book is great for emotional intelligence in general, not just for partners)

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There Is No Good Card for This: What To Say and Do When Life Is Scary, Awful, and Unfair to People You Love by Kelsey Crowe, Emily McDowell (It's written in an easy to understand and entertaining was with nice drawings and tables throughout. A great social /emotional IQ training book.) [ https://bookshop.org/books/there-is-no-good-card-for-this-what-to-say-and-do-when-life-is-scary-awful-and-unfair-to-people-you-love/9780062469991 ]

It doesn't have to be THIS expensive

Mon, 07 Nov 2022 15:50:49 GMT

This is a collection of links to offer you support for medical costs.

Medication costs:

Many medications have a brand name and a generic name. It's often possible to take a generic version of a medication and have the same therapeutic effect. Ask your provider if this is possible for your medications. You can check to see if there are generic alternatives here: https://www.authorizedgenericmedicines.org/product-finder
Many medications can be split in half. If this is possible for your medicine, ask your insurance to price the cost for the double strength pill. If it's less than twice the cost of the standard strength pill, you can have your doctor write for the stronger pill, split them yourself, and save money. This would look like: my dose is 50mg. My doctor orders 30 tabs of 100mg, and I pay for a 60 day supply, splitting the tabs.
Check costs at alternative pharmacies. Sometimes our insurance plans prefer us to use a specific pharmacy, but even so it can occasionally be cheaper to use an alternative pharmacy or even to pay without using insurance. Check prices at https://www.goodrx.com/search
Use a discount card such as one from GoodRx or FamilyWize. Sometimes these cards can bring the prices lower than those the insurance can offer.
Many medications have more expensive and less expensive similar medicines. These less expensive versions may require you to take more pills, or a combination of medications separately where the more expensive versions are once daily, or a combination of medications in one tablet. You can save money if you ask for the cheaper option.
Learn more about the free or low cost medications available at your local chain pharmacies. These lists change regularly so search (and let me know if any of these links end up dead ends) but as of the date of this writing, you can get more info on the following:
Meijer- https://www.meijer.com/services/pharmacy/free-prescriptions.html
Walmart- https://www.walmart.com/cp/4-prescriptions/1078664
Kroger- https://www.krogersc.com/drugs (must buy a membership for best discounts)
Walgreens- https://www.walgreens.com/psc/prescription-savings-club (must sign up)
Sam's Club- https://www.samsclub.com/pharmacy/rxsavings (must be Sam's club member)
Medications that are newer and do not have a generic form often have patient assistance programs to help people with insufficient insurance coverage to afford them. You can search for them by searching for "(name of your medicine)+ patient assistance program" or check the following links. Most programs will require you to show proof of income, such as the last year's tax return, and will need to be filed yearly.
The Partnership for Prescription Assistance Medicine Assistance Tool: https://medicineassistancetool.org/
RX Hope- https://www.rxhope.com/Patient/MedSearchHome.aspx
RX Assist- https://www.rxassist.org/patients
Needy Meds- https://www.needymeds.org/
https://www.needymeds.org/local-programs provides a searchable database of groups and organizations who can help you fill out these forms

General Healthcare costs:

Reimbursify is an app that will submit superbills and out of network claims to your insurance for reimbursement for a small per-claim fee. Make sure you're getting credit for every dollar you spend toward your deductible! https://reimbursify.com/filefast/
This website walks you through a step-by-step on how to get a lower rate on medical bills. Some of this information is more applicable to things like hospital stays or ER visits (looking for errors on an itemized bill) rather than single service appointments like an office visit. Other advice like negotiating cost based on consumer knowledge sites like FAIRhealth are solid no matter what type of healtcare you're paying for. https://www.peoplekeep.com/blog/the-secret-to-negotiating-lower-medical-bills

LGBT-->XYZ

Fri, 21 Oct 2022 10:07:26 GMT

Understanding the diversity of queer* identities in the 2020s

When I first came out (the first time) in the 1990s, things were quite different. We were still in the middle of the HIV/AIDS epidemic, queer marriage and domestic partnerships were illegal in all US states, and significantly more than half the states had anti-sodomy laws. We, queers, hid and banded together for safety in spaces like the theater program at school. We spoke in coded phrases do avoid outing ourselves. I did not see people like myself reflected on television, in books. There would occasionally be a special interest news story about gay rights that I would secretly record (on a VHS tape) to watch at night when everyone else was in bed.

I know that in 2020, things are not perfect- and even in many areas, they have not progressed far from how things were when I was growing up. But in many areas, with help from the internet and the passionate advocacy from those who came before us (Black Trans women, primarily), things have begun to improve. Teens and even children now understand that the way they feel inside is not shameful, not harmful, but a variation of normal. Parents don't attempt scientifically proven harmful "therapies" aimed at changing their children, but instead affirming their true nature. And in the face of these changes, youth are claiming their identities more than ever. In 2021, nearly 30% of LGBTQ youth aged 13-24 identified as transgender, nonbinary, or both.

The Trevor Project (2021) https://www.thetrevorproject.org/wp-content/uploads/2021/07/Measuring-Youth-Sexual-Orientation-and-Gender-Identity.pdf

For these same youth, 21% have sexual identities as something outside the identities of gay, lesbian or bisexual. Most people, even cisgender straight people, understand the concept of gay and lesbian. Many also have a firm grasp on the bisexual identity- attraction to two or more genders or genders that are the same and different from that of ones self. It is in this "something else" that many people who are not very familiar with the queer community begin to feel lost. Here is where we will examine these identities.

The "long" acronym (LGBTQPIA2S+) includes letters for many portions of the community- but not all. Starting with these letters:

T- Transgender: Transgender is an individual whose gender identity (internal gender concept) is different than their assigned gender at birth. This is an umbrella term that may include people who identify with terms such as "nonbinary" (gender identity outside of the male/female binary) "gender queer" (gender identity that is outside the traditional notions of gender- 'queering gender'), "gender fluid" (gender that fluctuates), "transsexual" (transgender person who seeks medical transition, can be seen as outdated term by some, but is preferred by others), "agender" (having no gender identity) and more. The opposite of transgender is cisgender- someone whose gender identity matches their gender assigned at birth.

Q- Queer: For more information about Queer, see the asterisk (*) below. Queer is an umbrella term for the longer acronym. It is fully and totally inclusive of all of the community- all those whose gender and/or sexual identities fall outside the social standard.
Questioning: This term is used to include people whose identities are not firm, "I don't know where I fall- If I'm straight or gay or something else." It's healthy to explore your identity and see what fits best.

P- Pansexual: Pansexual is a term similar to Bisexual (bisexual is an umbrella term inclusive of pansexual). Pansexual is a more politicized term, with attraction being defined as "without respect to gender."

I- Intersex: intersex individuals are those whose biology doesn't neatly fit into a male/female binary. This might be at the genetic level only, or expressed in a more visible way. This is a much more common condition than most people realize, 1/100- with around 1/5 of these receiving coercive surgery before they are able to consent.

A- Asexual, Aromantic and Agender (agender was defined above, under transgender)

Asexual- a lack of sexual attraction to any gender (not necessarily lack of libido or lack of sexual action). It's important to note that this is often mistaken for a medical or mental health concern.
Aromantic- a lack of romantic attraction to any gender (lack of romantic desire)

A note on "A for Ally"- A in the acronym does not and should not ever stand for "ally." While allies are an important part of advocacy and support for our community, they are not within the community. Asserting that A should stand for Ally eraces the identities that A does stand for, while simultaneously centering the feelings of cisgender, heterosexual individuals, who are claiming to be allied with us while causing us actual harm (by eracing us).

2S- Two Spirit- Many native american cultures identified a third gender, generally called by the modern Pan-Indian term Two-Spirit (or known by the appropriate term within each tribal nation's language). Although the diversity across these cultures is massive, the similarities remain- that these individuals were highly respected and afforded an important place in society until white missionary work sought to "normalize" gender identities.

+ The Plus stands for identities that aren't captured by the longer acronym.
Polysexual
Omnisexual

Split attraction model:
Sexual attraction- desire for sexual acts with a person or a group of people (a particular gender, for example)
Romantic attraction- desire for romantic acts with a person or group of people

Sensual attraction- the desire for tactile but non-sexual touch with a person (such as hugging, back rub)

Aesthetic attraction- an appreciation of beauty or attractiveness of another, such as a work of art
Emotional attraction- the desire to form an emotional bond with someone, to understand them better

Platonic attraction- the desire to form a friendship
Intellectual attraction- the desire to interact on an academic or thought-process level. "picking your brain."

from https://lgbtq.unc.edu/resources/exploring-identities/asexuality-attraction-and-romantic-orientation/

*"queer" specifically used as a term of inclusion here, having been reclaimed several decades ago. the more recent (post 2000s) pushback against the reclamation began as part of an anti-transgender movement. Substitute for LGBTQPIA2S+ as preferred.

Social Return

Wed, 05 Oct 2022 08:17:29 GMT

Where does the money go?

Below is a list of nonprofits and organizations I support. This information is provided to help clients feel more able to assess the "fit" between the two of us. Feel free to click any name to learn more about the organization's work, or ask me more about the group.

Autistic Self-Advocacy Network- https://autisticadvocacy.org/

The Buckeye Flame- https://thebuckeyeflame.com/our-mission/

Disability Rights Ohio- https://www.disabilityrightsohio.org/goals

School for Chipas- https://schoolsforchiapas.org/who-we-are/

MIGIZI- https://www.givemn.org/organization/Migizi-Communications

Planned Parenthood- https://www.plannedparenthood.org/learn/ask-experts

Harbor Camps for Transgender Youth - https://harborcamps.org/

Transgender Legal Defense & Education Fund- https://transgenderlegal.org/our-work/

In addition to supporting these organizations, I regularly offer pro bono and sliding-scale appointments.

Transgender gatekeeping

Mon, 26 Sep 2022 20:44:14 GMT

"Why do clinicians desire and at times demand “100% certainty” from their trans patients before accessing gender affirming care, when they would not do so when patients take on college debt, or have children, or get a tattoo?" (Marrow, 2022)

More and more frequently, medical providers are offering an informed-consent model for healthcare in transgender individuals. This parallels the way cisgender people receive care in nearly all circumstances. The rate of "regret" in gender affirming procedures (including medical and surgical transition) is typically cited at less than or equal to 1% (Bustos et al., 2021), while the rates of regret across "all" elective but medically necessary surgeries in cisgender individuals is considered "relatively uncommon" at just over 14 percent (Wilson et al., 2017). Because of the extreme rarity of transition regret (which, when present, is four times more frequently due to external societal pressures than to internal identity realignment [Turban et al., 2021]), following the informed consent model is both the least stigmatizing way to support transition care and to offer evidence based care.

Unfortunately, until medical providers and surgeons, insurance companies, and even the WPATH SOC more eagerly embrace informed consent for transition care many of us will be forced to endure repeated, unnecessary, and often costly psychiatric evaluations of questionable benefit.

My commitment to you: I am not here to gate-keep, but to hold the door open to the medically necessary care that you require. I follow the GALAP letter writing pledge (learn more here)

I DO offer slots for free affirming letters ; I will revise and update both free and paid letters as required at NO COST (examples: name, gender, and pronoun changes since original issuance of letter; updating an expired letter) for a period of at least one year after the initial evaluation. If there have been significant changes in the details of the letter (physical or mental health, social or financial situations) that would impact the accuracy of the letter to the extent that a full re-assessment would be required, this would be completed at a significantly reduced rate.

References

Bustos, V. P., Bustos, S. S., Mascaro, A., Del Corral, G., Forte, A. J., Ciudad, P., Kim, E. A., Langstein, H. N., & Manrique, O. J. (2021). Regret after gender-affirmation surgery: A systematic review and meta-analysis of prevalence. Plastic and Reconstructive Surgery - Global Open, 9(3). https://doi.org/10.1097/gox.0000000000003477

Marrow, E. (2022). Breaking Cycles of Harm: Lessons From Transgender History for Today’s Clinicians. The Behavior Therapist, 45(6), 189. https://services.abct.org/i4a/doclibrary/index.cfm?category_id=25

Turban, J. L., Loo, S. S., Almazan, A. N., & Keuroghlian, A. S. (2021). Factors leading to “detransition” among transgender and gender diverse people in the United States: A mixed-methods analysis. LGBT Health, 8(4), 273–280. https://doi.org/10.1089/lgbt.2020.0437

Wilson, A., Ronnekleiv-Kelly, S. M., & Pawlik, T. M. (2017). Regret in surgical decision making: A systematic review of patient and physician perspectives. World Journal of Surgery, 41(6), 1454–1465. https://doi.org/10.1007/s00268-017-3895-9

The new WPATH Standards of Care are out!

Fri, 23 Sep 2022 09:42:03 GMT

The new season is a great reason to make and keep resolutions. Whether it’s eating right or cleaning out the garage, here are some tips for making and keeping resolutions.

World Professional Association for Transgender Health (WPATH) is the organization that supports healthcare providers seeking guidelines for offering healthcare to transgender and gender nonconforming (TGNC) individuals. This year, they have published the eighth version of their Standards of Care (SOC8), which is the guideline that is used worldwide. In the US, this guideline is especially helpful in supporting our right to access care through insurance companies.

Although I have not had the opportunity to fully read and compare SOC7 to SOC8, there are some significant and important changes to note:

- expanded chapters on evaluation across the lifespan (pre-puberty, post-puberty youth, and adulthood)

- expanded chapters on other identities and cultural situations (nonbinary, intersex*, eunich, and people living in congregate living situations)

-specific named procedures commonly denied are explicitly listed as "medically necessary" (body contouring, vocal surgery and training, facial surgeries, hair removal).

You can read the entire SOC8 here: WPATH SOC8 (opens in a new tab)

*There has been formal pushback on the pathologizing language in the intersex chapter. It was recommended by International Transgender Health in conjunction with Intersex leaders, during the public opinion term, to withdraw and revise this chapter. "We recommend that this chapter should be removed entirely from the SOC8. The content of this draft chapter is pathologizing and in conflict with global human rights standards. This, combined with absence of mention of intersex considerations in the other SOC8 chapters, sends a message that diminishes Trans people who are also Intersex and their health needs. In the future, WPATH should consult with Intersex communities and include experts from the community in leadership roles when developing inclusive standards of care." (source)

Why am I here?

Tue, 20 Sep 2022 18:02:16 GMT

Learning more about my path to become a nurse practitioner.

Why Am I Here?

I struggled with my mental health since I was young and have been in and out of therapy for the last 25+ years. At its best, therapy can offer support and guidance in times of trouble and even times of stability, to help process every day concerns. At its worst, therapy can be misinformed, toxic, or used to coerce or harm. I have had both good and bad providers. I knew, as a child, that I would grow up to be a nurse. I have always loved nursing.

As a transgender, disabled and multiply neurodivergent individual, it was not uncommon that I would seek specialist care and be told that yes, the provider did offer the service I was seeking, but no, I couldn't access it because of a co-occurring condition. This is a common experience for people with our intersecting identities- transgender care providers working from facilities that aren't accessible; trauma experts in mental health that are uncomfortable working with transgender individuals. I would frequently find myself frustrated; having to spend the first several sessions of therapy of explaining the nuances of my existence before I even begin to start on the problems I'm there to address (which often are completely unrelated!) Exhausted and dissatisfied with my care, I often thought "if all of these things occur together with such frequency, why is it so hard to find a provider who understands how they intersect?"

One day, it dawned on me that I was a provider, and I did understand. I had been offering trainings for the community for years and loved helping coach my peers on how to talk to their providers to get the care they need. I realized that it would just be taking it a step further to go back to school and get my advanced degree to be able to offer the missing support that I was seeking for my own self.

My commitment to my clients: If I don't know, I'm eager to learn. I am here to support you.

Augmentative and Alternative Communication (AAC), a brief introduction

Tue, 05 Jul 2022 00:38:49 GMT

“More autistic people should be educated about [AAC] and understand that it is a valid option.”

-Donaldson, A. L., corbin, endever, & McCoy, J. “Everyone Deserves AAC”:

Augmentative and Alternative Communication (AAC)

This guide is meant to be a 101-level intro for older youth and adults who may benefit from AAC but have not yet explored the full spectrum of options. Because I am USA and English based, the guide itself is also centered on English and USA-based resources. This project was compiled by me, Daniel S. Hardy, a part-time AAC user. Daniel uses a combination of vocal speech, PSE (ASL-based signs), and high and low-tech AACs for android/PC (the tools/techniques I use are marked with an asterisk [*] below). This project may be freely shared with attributions but not reposted.

What is AAC?

AAC is any strategy or combination of strategies (such as low-tech pictures and letter boards, or writing or drawing on paper or a whiteboard; high-tech apps with pictures/symbols, letters, text/speech conversion, or controlled by head movement or eye gaze; and gestured, demonstrated, and signed communication). These include products not specifically designed for AAC- like text messaging or emojis.

AAC is sometimes seen by professionals as a measure of ‘last resort’ when efforts to communicate orally have not met the individual’s needs. This concept is outdated and parallels the history of the Deaf community's forced oralism, where sign language was seen as a “less desirable” form of communication. Research has shown that offering all possible methods of communication improves the ability to understand and be understood.

Like the Deaf community before us, the neurodivergent community has been pushing back on the misunderstanding that speech is best, and research within our community also supports the concept that all communication with the goal of understanding is valuable and should be valued and encouraged.

Who can benefit from AAC?

You can! Anyone who sometimes struggles with making ‘mouth words,’ even occasionally, may benefit from a combination of AAC strategies. Most people already use them without noticing- such as nodding their head to answer a question while on the phone. As we begin the process of unmasking our autistic traits, we may find that communication is more exhausting than we previously acknowledged.

Let’s talk about low tech AAC

Low-tech AAC includes drawings and pictures assembled on a page or book of pages that someone can point to or pick up. Other options include a board with letters or words where someone can spell out words or phrases, or a whiteboard and marker or pen and paper. For more, see “Where To Start.”

Let’s talk about high tech AAC

High Tech AAC options include digital pictures that are mapped to words or phrases, keyboards, settings and apps that speak what you type or write, and saved words and phrases buttons. There are also devices that can recognize eye gaze or head movements that work better for individuals with less reliable hand control. High tech AAC options are available for all types of electronic devices, and you can try many types for no cost to see if this is a type of AAC you would like to use. For more, see “Where To Start.”

Let's talk about manual AAC

Manual AAC can be a wide variety of things. Some folks learn formal languages like American Sign Language. Others use signed words to communicate English-based thoughts (such as PSE- pidgin signed English or SEE- signed exact English). Other, less formal options include gestures, pointing, and leading people to the things you need. For more, see “Where To Start.”

What to look for in an AAC system

What to look for depends on you and your preferences. When you’re beginning, it may benefit you to look for a low-cost or free option that offers many customization options. Frustration is easier when you are limited by your choices, and many AAC users advocate for a robust system to start with. Our suggestions offer a fair blend between cost and features so that you can get started easily with minimal frustration and without a high investment.

Where To Start

If you haven’t tried any AAC techniques, you might not know what types you prefer. It’s likely that you’ll want to start with low-cost options as you experiment to see what works well for your communication style. If you are already comfortable with electronic devices, you might already be using text apps. You can text back and forth with someone even if they’re right next to you. There are also accessibility options on most devices that can read text out loud. To find these, check in your accessibility settings.

More robust high-tech options include dedicated apps that can save phrases for later use or match photos to concepts (the picture of a restroom door might speak the sentence “I need to use the restroom.” or “where is the toilet?”). Some individuals have a dedicated device for communication only. The benefit for this is you don’t have to stop whatever activity you’re engaged with on your device when you want to communicate. If you’re using your phone or computer as your voice, you will have to switch back and forth between applications if you want to be doing something other than using your communication app.

Some recommended High Tech options from other AAC users include:

(prices accurate in summer, 2022; More advanced options like eye-gaze software were not included due to cost and lower universal applicability)

GBOARD multilingual handwriting keyboard (free)

converts handwriting to type (android)

directions here

Text to speech

iPhone here

Android here

Office products (like Word) on a computer here

Sounding Board (free)

Free, customizable picture-based speech app
iPad/iPhone here

Alexicom AAC ($0.99/free for Android)

Similar to Sounding Board, it also has words assocciated to the photos. This can help the user learn the words and the help the recipient of the communication to understand.
iPad/iPhone here
Android here

Speech Assistant AAC* ($19.99 for iPad/iPhone; free with a more robust paid option for Android)

Text-based, customize and save phrases by theme.

iPad/iPhone here

Android here

Talk For Me* (free)

similar to Speech Assistant, but for PC here

Lower tech options include

Paper and pen/ whiteboard and whiteboard marker*

sold at most dollar stores/ office or school supply stores. You can also make your own wipe-off communicator with a piece of shiny plastic, laminated paper, or glass in an empty picture frame and an erasable marker.

Gesturing, leading, shaking head yes/no to single, simple questions*

These methods are especially helpful during times of overwhelm.

Low-Tech Picture/word boards

These work the same as picture-to-speech apps, but on paper. You and your conversation partner agree on a meaning for each image OR there is a simple image that has a commonly understood meaning (like a toilet for 'bathroom'). These are especially helpful when there is disruption in auditory or visual processing and understanding typed/spoken words are too difficult. Both the receiving and sending communicators can use the pictures to carry on a conversation. These can be arranged into grids to select one-at-a-time or single images can be rearranged into phrases or sentences.

Fluent AAC

This site has very basic communication boards that are only customizable by changing the image of the childlike avatar. It's a good place to start if you're not familiar with the concept and like a pre-set vocabulary. here

SEN Teacher
This site offers you the ability to create your own picture board from scratch. You can customize them with any images and/or words and set them for different numbers of images per page. (Be cautious of the large ads at the top of the page) here

Tim's Printables

This page offers a printable keyboard template to allow you to spell out your message one letter at a time. It can be used in combination with a word-board from SEN Teacher above. Get the printable keyboard here

Manual options

American Sign Language (ASL) -

The best way to learn ASL is in person with a Deaf instructor. In the Cincinnati area, St Rita’s School for the Deaf offers classes here . Many colleges and some high schools also offer classes. However, live, in person classes are not always compatible with our needs.

ASLUniversity

ASLU is online, Deaf-owned, and strongly vetted by both autistic and Deaf community members. The dictionary and main page are here while the Youtube channel with topic-based playlists (and 4 "years" of classes) is here

ASL fingerspelling

Fingerspelling is slow but many more people know the handshapes of the ASL alphabet than other ASL signs, so it can sometimes be an effective way to communicate, especially with general members of the community. ASLU's fingerspelling page is here

Pidgin Signed English(PSE)*

PSE incorporates the signs from ASL into a more English-like grammar. Most late-in-life ASL learners sign a combination of PSE and ASL.

Signed Exact English

SEE is not generally recommended as an AAC strategy because it's not a language- it's used in school to teach deaf children the mechanics of the English language. It requires base signs plus sign endings (WALK+ed) and uses other English-language modifications. More information can be found here :

Advice from AAC users

You may feel frustrated when you first start using AAC. The more you use it, the more comfortable you are likely to become. If you have been using mouth words your entire life (even uncomfortably), you may feel limited by your AAC until you customize your strategies to fit your needs. It is rare that one AAC tool or device will work for a person in every setting.

Practice around safe people- close friends, partners, family, online video chats with other neurodivergent folks, and your therapist. If you don’t have enough of these supportive people in your life, you can try using it in low-stakes communication settings with predictable scripts, such as ordering at a coffee shop.

You might find that a single-page picture board works best when you’re nearing a meltdown, typing in an app works well when you’re ordering food or shopping, and that mouth words work well when you’re in a familiar and comfortable setting. It’s perfectly fine to customize your strategies to meet your needs.

Remember that you have a legal right to use AAC instead of or in addition to oral language. This includes places like your job or school. This would be considered a reasonable accommodation in nearly every setting under the Americans with Disabilities act. For more information about communication accommodations, see the links below.

Where can I learn more?

Facebook group- Ask Me I’m an AAC user

https://www.facebook.com/groups/456220758119314

Kit Autie-

Using AAC as a (speaking) autistic person.

(this is a great resource to use to explain to others why you’re using AAC) https://www.youtube.com/watch?v=z3YQ9F4SFAQ

My AAC is Part of My Gender Presentation: https://presenters.aacconference.com/videos/U1RVMVFUSXc=?fbclid=IwAR1AVYLkQmSN97xWDZhTw_skuSgEntt_PDfzPXzdTUWuBkaMrC0IZ4F41cs

ADA accommodation examples related to communication

https://askjan.org/articles/Communication-Difficulties-in-the-Workplace.cfm

ADA list of communication accommodations

(follow links down the left side of the page) https://askjan.org/workrelatedfunctions/Communicate.cfm

AAC In the Cloud- AAC users conference

(2022 linked, older years in the menu on the upper right. Hundreds of hours of conference presentations on AAC)

https://www.aacconference.com/schedule.html

More information in the references below

Cite as:

Hardy, D. S. (2022, July 4). Augmentative and Alternative Communication (AAC). Retrieved MM,DD, YYYY. from https://www.danielhardy.org/aac

References:

Donaldson, A. L., corbin, endever*, & McCoy, J. (2021). “Everyone Deserves AAC”: Preliminary study of the experiences of speaking autistic adults who use augmentative and alternative communication. Perspectives of the ASHA Special Interest Groups, 6(2), 315–326. https://doi.org/10.1044/2021_persp-20-00220 Video presentation: https://presenters.aacconference.com/videos/UWpFeVFUSXg=

Zisk A.H. and Dalton, E. Augmentative and Alternative Communication for Speaking Autistic Adults: Overview and Recommendations (2019). Autism in Adulthood. (93-100). 93-100.https://doi.org/10.1089/aut.2018.0007

Special thanks to the: Ask Me I’m an AAC User Facebook Community, linked above.
These links and references were obtained from personal experience and input from other ND individuals in the AAC using community. Daniel has no financial interest in any of these pages and linking them here is not a specific endorsement of any content that they provide over other providers.