Spectrum Life Magazine Fall 2023 Issue from Autism Empowerment

L ightly-weighted for an extra sense of security and stability, the TwiddleNathan helps youngsters find that “just-right zone” for maintaining attention and appropriate behavior for tasks and activities. Crafted from cozy, durable fabrics and plush fleece, the Nathan features high-grade fidgets attached with ribbon loops that snap, to enable switching around and personalizing fidgets for variety’s sake, training purposes, or the child’s own preferences.

Ideal for home, therapy clinics, and ”safe spaces” at school and other group settings.

SENSORY TOOL HOUSE, LLC

FEATURED SECTIONS RECREATION

Sensory Tool House, LLC A Haven for Neurodiversity and Inclusion.

EDUCATION

Creating More Equitable Spaces: Part 3 Differentiated instruction for students of all abilities.

7 13 17 22 18

ADVOCACY

Knowing your Workplace Rights Wisdom from lived experience.

Navigating with Niko Person-Centered Planning for Self-Directed Living.

LIFESpAN

Co-Parenting and Custody

Do’s and Don’ts for IEP meetings and Healthcare appointments.

Autism Empowerment Acrostic A Celebration of Strength, Resilience, and Unity.

Empowering Families Through Special Needs Planning Wisdom from Advocate and Attorney Eva Luchini.

#AskingAutistics - Animal & Human Bonding

Do you find animals easier to understand than humans?

5 10 38 44 52 55

Ask Spectrum Life

Let’s talk about learning disabilities and neurodivergence.

HEALTH + WELLNESS

Exploring Links Between Weight and Disability

The importance of accessible fitness.

#AskingAutistics with Lyric Rivera

Do medications work differently for Autistic people?

THERApY

Do You Have Interoception Issues?

Dr. Anson Service helps make sense of the signals from within.

Thriving at Work: My Sensory Accommodations Adaptations reduce overload.

Upcoming Autism Empowerment Activities Connection, Compassion, Community.

Welcome to the Fall 2023 edition of Spectrum Life Magazine!

Hello friends! If I were to give a theme to this issue’s content, it would be Making Sense of It All, from Sensory Insights to Complex Concepts! Enjoy!

In this issue’s Connections for our Community (page 5), we discuss building empowered communities through partnerships. Autism Empowerment is not merely an organization; it is a calling, a passionate movement that echoes through the lives of youth, adults, and families worldwide.

Our cover story takes you behind the scenes of Sensory Tool House, LLC (page 25), a neurodivergent-owned business and neurodiversityaffirming store with sensory tools for all ages. Keeping with the sensory theme, Dr. Anson Service helps provide support for interoception challenges in Do You Have Interoception Issues? (page 48) and Judy Endow shares Thriving at Work: My Sensory Accommodations (page 52).

In our Advocacy section, empowering themes include Knowing Your Workplace Rights (page 7) and Person-Centered Planning for Self-Directed Living (page 10). And although it’s the Lifespan section, the advocacy continues in Empowering Families through Special Needs Planning (page 18) and Co-Parenting and Custody Do’s and Don’ts (page 13).

In Ask Spectrum Life (page 38), we answer reader questions. This issue, we provide encouragement to new parents while defining different types of learning disabilities. We also discuss differentiated instruction in Creating More Equitable Spaces (page 36).

Columnist Lyric Rivera is back #AskingAutistics about Animal & Human Bonding (page 22) and Do Medications Work Differently for Autistic People? (page 44). Ryan Lockard promotes accessible fitness while Exploring Links Between Weight and Disability (page 41).

Finally, the creation of the acrostic poem, Autism Empowerment (page 17), was born out of a deep commitment to celebrating the strength, resilience, and unity of the autism community. Thank you for being an Ambassador for Acceptance of All Abilities!

Yours in empowerment,

Karen Krejcha

Executive Director & Co-Founder: Autism Empowerment™

Editor: Spectrum Life Magazine™

FALL 2023 | VOLUME 13, ISSUE 2

SPECTRUM LIFE MAGAZINE TM A program of Autism Empowerment TM

Karen Krejcha, Autism Empowerment, Publisher

Dave Born, Graphic Designer

Editorial Advisory Board:

Aaron Blackwelder

Amy Donaldson, Ph.D, CCC-SLP

Laurie Drapela, Ph.D

John Krejcha

Tara O’Gorman, MSW

Anson Service, Psy.D, LMHC

Brian Tashima

Mailing address:

Autism Empowerment

P. O. Box 871676

Vancouver, WA 98687 (360) 852-8369

www.AutismEmpowerment.org

spectrumlife@autismempowerment.org

Autism Empowerment is a 501(c)3 nonprofit devoted to promoting a culture of acceptance and empowerment for children, teens, adults and families within Autism and Neurodiverse communities.

Autism Empowerment makes no warranty, guarantee, endorsement or promotion of any service provider or therapy option listed in this publication or our websites: AutismEmpowerment.org and SpectrumLife.org. This is a free community magazine created as a courtesy to the public. Autism Empowerment cannot be held liable for any action or decision based upon information found in this publication or our websites. It is the responsibility of individuals to discuss any therapy or treatment option with their care team. Every effort is made to ensure accuracy and verify information, however readers using this information do so at their own risk. No part of this publication may be reproduced or transmitted without prior written consent from the publisher, Autism Empowerment. © 2023 All rights reserved.

ON OUR COVER

Explore behind the scenes of Sensory Tool House, LLC with Lauren Howard and founder Katie McMurray (page 25).

Photo courtesy of Shailee Berry Photography

Connections for our Community Connections for our Community Connections for our Community

Building Empowered Communities Through Partnerships

Hello! I’m John Krejcha, Program Director and Co-Founder of Autism Empowerment, the nonprofit that is both publisher and creator of Spectrum Life Magazine. In order to better serve you and teach about the inner workings of our organization, each quarter I will be sharing behind-the-scenes updates about Autism Empowerment programs and services.

Today, I want to talk about something close to our hearts at Autism Empowerment: the power of Community Partnerships.

From our very beginning, we’ve believed in the positive power of collaborating with advocates, allies, groups, and organizations, both nonprofit and for-profit, both within autism and disability communities, and beyond.

It truly takes a village to find and provide the support and resources that each member of our society needs to thrive. Synergistic partnerships empower individuals, families, and organizations to do more good collectively. When we are enriched with resources, knowledge, and connections, we want to pass these along to you in a variety of ways including our magazines, our Autism Empowerment podcast, our resource directory, our website, social media, or community partner trainings and special events.

Our list of partner organizations is vast and each plays a vital role in enriching the communities we serve. While we can’t name them all here, each one contributes significantly to the success of our community. Let me share a couple of examples.

We have been partnering with the Oregon Zoo for the past five years in a variety of ways, from consulting on internal inclusion and accessibility projects, to giving the opportunity for individuals and families to visit the zoo at less crowded times. Over the years, hundreds of youth and adults have been able to access the Oregon Zoo which would not have been able to otherwise.

Stephen’s Place has been the home to many of our group gatherings and events. We regularly collaborate with PEACE NW and will be exhibiting at Special Celebrations Trunk or Treat event in Vancouver, WA on October 28th.

We offer autistic and disability consulting, neurodiversity training and also participate in coalition and consulting work. Recent examples include partnerships with Fort Vancouver Public Library and Oregon Office on Disability and Health (OODH).

We also want to express our gratitude to The Standard in Portland, our community partner for the second consecutive year at their annual Volunteer Expo on September 7th, 2023. It’s through such partnerships that we strengthen our community with the help of new volunteers.

In an exciting development, we’ve teamed up with Second Player Score, a Vancouver band and multimedia development company to create a scripted short film that will help shine a positive light on neurodivergence as well as showcase local characteristics of the great city we live in. The goal is to involve as much Vancouver-based talent as possible, emphasizing autistic and neurodivergent individuals. This collaboration received grant funding from the City of Vancouver Culture, Arts, and Heritage Commission, demonstrating how government, for-profit, and nonprofit sectors can come together to support our community.

Over the next year, we’ll welcome more partners, both well-established organizations and newcomers in the Vancouver, Portland, and Seattle regions and beyond. Each partnership will be forged with the goal of making our community stronger, ensuring that individuals and families feel deeply connected to the place they call home.

After enjoying all the great content in this issue, please check out the www.SpectrumLife.org website where you will find all past issues and blog posts for Spectrum Life and our sister publication Zoom Autism Magazine. To learn more about our other programs and support services, please visit our Autism Empowerment website at: www.AutismEmpowerment.org

There you can enjoy featured series: A Day in our Lives, #AskingAutistics with Lyric Rivera and Navigating with Niko Boskovic. You can also listen to the Autism Empowerment podcast, join our mailing list, and learn about our AWEtism We Embrace support group.

Please feel free to reach out to me with any questions about our partnerships and programs, and please remember: Content + Community = Connection.

Warm Regards, John

Photo courtesy of Lyric Rivera

Knowing Your Workplace Rights Wisdom from Lived Experience

By Lydia Wayman featuring Valerie Paradiz

Knowing your legal rights is the best way to protect and advocate for yourself in the workplace. While it is easy to find articles about disability employment rights online, there are some questions that facts just can’t answer. For that, you need to talk to someone with lived experience.

Valerie Paradiz is an autistic adult who has personally encountered a wide range of disability employment issues. She began her career in post-secondary education,

civil rights of individuals with disabilities in many areas of public life. The ADA makes it illegal for employers to discriminate based on disability and requires employers to know their responsibilities regarding the ADA.

Valerie points out that your work-related ADA rights don’t just apply to the workplace itself. For example, you may have rights to accommodations if you have to communicate with your employer during off-hours or when you are at home. If you take public transportation like a bus, train, or subway to get to work, the ADA also applies there.

Disclosure

Deciding whether to share disability-related information with your employer is a personal choice. It may be the best way to advocate for yourself so that you can do your job effectively. Your choices about when, how, and to whom you disclose will depend on the situation.

Some people prefer to disclose before they are hired. This can give you a better idea of how the employer views disability. Others prefer to wait until they start to decide whether accommodations will be needed.

and then, following her son’s diagnosis, she founded a school for autistic kids.

Since her own diagnosis, she has created programs like the Integrated Self-Advocacy (ISA) curriculum, which was used in New York City public schools and is now being used as a peer mentoring program at Stanford University. Valerie led a group with autistic team members in the development of a course to teach independent living skills to young adults with disabilities.

In her former role as Vice President of Services and Supports at Autism Speaks, she led a research-based employment initiative that supported autistic job candidates and employers to improve job outcomes.

As you read on to learn about your legal rights, Valerie offers some equally important words of wisdom based on her own lived experience.

The ADA: Your Legal Rights

Employment rights are covered under the Americans with Disabilities Act of 1990 (ADA), which protects the

Valerie prefers to start the conversation early, and she has seen a shift over the years in how receptive employers are to disclosure. “I still go with the approach of disclosing upfront. As I’ve gotten older and the movement we are all a part of grew stronger, and people understood autistic people more, it wasn’t as much of a risk.”

Some people also choose to share their diagnosis with coworkers, who can function as natural supports. You might even be able to get your needs met without discussing disability. For example, you might say that you are sensitive to lighting or temperature and ask if it’s okay to change the settings in the room.

Discrimination

Some forms of job discrimination are obvious, while others occur simply because people are not informed. People with invisible disabilities such as autism can be misunderstood even when the employer is aware of the diagnosis.

Just because someone with a disability is not hired, it may not fit the definition of discrimination. The person applying must have the skills and experience to do the job, with or without accommodations. It is not considered discrimination if an employer turns down an applicant

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who is not qualified. Employers are not required to hire a disabled applicant over others.

However, employers cannot:

• Ask questions about disability during an interview

• Require unfair standards or tests that are not related to the specific job

• Refuse a promotion because of a disability or accommodation needs

• Pay an employee less if they require accommodations

• Deny benefits like health insurance because of a disability

• Limit an employee based on stereotypes about what a person with a certain disability can or cannot do

• Force an employee to work separately from others

• Retaliate against an employee who reports a violation of the ADA

Accommodations

Reasonable accommodations are meant to reduce unnecessary barriers so that individuals with disabilities are able to fully participate in the workplace. If you are qualified to do a job but need accommodations for essential job tasks, the employer must provide them. Accommodations might include providing equipment or devices, adjusting a work schedule, or adapting testing and training materials.

Whether an accommodation is “reasonable” is based on considerations such as the cost of accommodation versus the size of the company, whether outside funding is available, and the impact on other employees’ ability to do their jobs.

“An accommodation I have had is that, if possible, I like to be in a space that has natural lighting for most of the work day,” Valerie says. “If I can’t have natural light — like if there are no windows in the building — a reasonable accommodation could be that the employer ends up purchasing a floor lamp that isn’t shining down from above.”

Accommodations don’t always require you to get permission or disclose your diagnosis to anyone. “If you can do something that doesn’t go against safety or against the basic rules for all employees, then usually you’re okay. If it doesn’t conform to the basic standard, then you need to go to your employer.”

Some accommodations, like job coaching or modifying your work schedule, require you to formally disclose to Human Resources (HR) or a supervisor. Your employer may ask for documentation, such as a letter from your doctor.

You might not know how to navigate the process of formal disclosure or seeking accommodations at your company.

“Sometimes the process starts by going to a trusted co-worker or supervisor,” Valerie says.

“The responsibility [of requesting accommodations] shouldn’t be yours to figure out alone. You need help either from a

coworker, your boss, or the company. Starting the process with someone you feel like you can speak to or type with is a good start. Just don’t hold it all in.”

When asked what is most important for autistic people to know about their workplace rights, Valerie says there are two things that are equally important.

“One is your legal rights under ADA. You also have rights that are more personal and have to do with your own empowerment. Sometimes you have to first visit a place and talk to people there before you get a sense of whether or not it’s a place you want to work. Some of us on the spectrum don’t realize that, and we should. By going in, we’re there to interview them as much as they are to interview us.”

Self-Advocacy Strategies

Valerie offers some suggestions to prepare for a conversation with your manager or HR:

• Take time to understand how your brain works and what kind of accommodations you need.

• If you’re feeling hurt, angry, or burned out, it’s important to process your feelings and figure out what it is that you need in order to be safe and productive in your job.

• Identify who you are going to go to with the request. This might be your manager, supervisor, or someone in the HR department (which may go by a different name at your company).

• Approach the conversation in a collaborative way. If your employer cannot reasonably provide what you ask for, you can negotiate.

• Consider creating a script for yourself. Someone who you trust can help you find the words to use, whether you’re speaking or typing.

• Consider whether you would like someone – your supervisor, coworker, or job coach – to join you when you make the request.

• Make sure the whole thing is documented properly. Your employer should have documentation of your request, and you should document each communication and request for your own records. Keep copies of all paperwork and communications in writing.

References and Resources

Want to learn more about disability rights in the workplace? Check out these resources:

• Job Accommodation Network (JAN) is the “leading source of free, expert, and confidential guidance on job accommodations and disability employment issues.”

They also have a Workplace Accommodation Toolkit and a page with information specific to accommodating autistic employees. https://askjan.org https://askjan.org/toolkit/index.cfm https://askjan.org/disabilities/Autism-Spectrum.cfm

Continued on next page

• The Rehabilitation Services Administration (RSA) maintains a current list of all state vocational rehabilitation agencies. Each state has its own program to help people with disabilities prepare for, obtain, and maintain employment. https://rsa.ed.gov/

• Real Work For Real Pay: A Self-Advocate’s Guide to Employment Policy is a toolkit creates by the Autistic Self Advocacy Network. It is available in a plain-language version and an easy-read version with a glossary and visuals https://autisticadvocacy.org/policy/toolkits/employment/

• This guide from U.S. Office of Disability Employment Policy covers “why, when, what, and how” of disclosing in the workplace. bit.ly/ODEPdisclosure

• The ADA: A Recap in Plain Language is a video by The Arc of Northern Virginia that relies on pictures, simplified words, and slower speaking to make it accessible. https://www.youtube.com/watch?v=oir6JZhhxc0

• Partnership on Employment and Accessible Technology (PEAT) has a vision where new and emerging technologies are accessible to the workforce by design. https://www.peatworks.org

This article was originally published in Zoom Autism Magazine’s Employment and Entrepreneurship issue #19. To see this more articles from this special edition, please visit: https://www.spectrumlife.org/zoomautismissue19

Lydia Wayman is an autistic advocate with a B.S. in education and an M.A. in English and nonfiction writing. Through her presentations, writing, and art, she uses her experience to support families and professionals by helping them understand how autistic kids see the world. She has worked at an autism resource center, mentored youth with disabilities, and spoken at Girl Scout events, parent-led groups, and conferences with her autistic peers. Her writing has appeared in magazines, books, and newspapers, and she has helped to develop several training programs and professional courses.

Navigating withNik

By Niko Boskovic

This spring I started thinking about my future and where I want to be in the next five years. I don’t know if this sort of planning is something that’s unique to the disability community, but it’s an opportunity to get the important people in my life together and share where I’d like to be in my life in the near future.

I remember doing something similar when I was in high school, but COVID and its unanticipated effects on the support services system made so many of my goals out of reach. This year, we seem to be the furthest we’ve been from the height of the pandemic’s worst effects, and life as we know it now includes virtual options for most meetings, so it was easy to set up time with Barb, who is my life coach. She has another title with the county, but that’s what my mom called her once, and I liked that a lot better than “behavior consultant.”

oPerson-Centered Planning for Self-Directed Living

they are committed to me living a life that’s self-directed as much as possible.

I really prefer this perspective because I think we place too much emphasis on a person achieving society’s idea of independence, i.e., the house with the fence and the nice car bought with the income from a full-time career, and a loving spouse who is supportive and is also independent. That idea and all it represents is how ableism can keep disabled people from leading self-directed lives. It keeps us from asking for help when we need it due to shame or feelings of inadequacy. It makes us feel like failures if we aren’t hitting the same milestones as someone who is not disabled.

Person-centered planning reminds me of our interconnectedness as people. I rely on so many people in my community, but

So far, we’ve held three meetings for a total of six hours (but it’s important to note that spelling out my thoughts takes up a lot of time). It has been really great to have this time with my parents, especially now that they are separated because it has brought them both to the table and emphasized each of their roles in helping me attain my goals.

In a way, it’s an Individualized Education Program (IEP) for life, except you want to take part! The areas of focus are much broader, and in my case, included home, work, education, and social opportunities.

We have dived deep into the ocean of possibilities, and it’s been empowering for not only me but my parents because

few of them are autism specialists or such. I see the same dentist my sister sees, I go to the family doctor that my mom uses, and really, I try to stay local because that’s where I spend most of my time. It’s the same life as anyone without disabilities might live — except, of course, it’s not really the same life because my experience of navigating the world is different. Therefore, my connections to other people look different too. But I haven’t found another way to express their interconnectedness until now.

I need direct support workers every day to move me along, get me where I need to go, or support me in completing any writing assignments I am responsible for. I couldn’t do it

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without them, and yet my contribution to disability justice is dependent on their support. Does that mean I will never live independently or work on my own? Does that matter?

A self-directed life doesn’t place independence as the goal (unless that’s what the person wants). Instead, it recognizes that you may rely on the disability social services system for parts of your life because that’s an accommodation you need. It acknowledges that there are people in our lives who will support us in some way into the future.

A person-centered plan is a great tool for someone who is interested in seeing how their life goals are interconnected with both the formal disability services system and the natural supports that exist already or are part of a goal. It’s also the companion to determining alternatives to guardianship.

All in all, I can’t stress enough how empowered this process left me and how it was really positive to go through with the people who know me best.

Perhaps that’s the point. Wouldn’t it be wonderful if every young person — disabled or not — had the support of people in their lives in this way?

Navigating with Niko is part of a regular series at Autism Empowerment and Spectrum Life Magazine by Niko Boskovic. To read past and future articles, visit www.spectrumlife.org/navigatingwithniko.

Niko Boskovic is a 21-year-old autistic adult from North Portland, Oregon who uses a letterboard to communicate, advocate and share his passions and ideas. He graduated in 2019 with an Oregon high school diploma and currently takes classes at Portland Community College in writing and history. Niko is passionate about poetry, nature, family, and disability justice and is very pleased to be able to share his thoughts and experiences with youth, adults and families in autism communities through his monthly blog at Autism Empowerment and Spectrum Life, Navigating with Niko. Facebook: @NikoBoskovicPDX

ALL AGES AND

Co-Parenting and Custody Do’s and Dont’s Do’s and Don’ts for IEP and Healthcare Appointments

by Diane Wiscarson and Amy Dorlon

Background

Amy Dorlon is blessed to be the mom of an amazing son impacted by disability (who happened to email 5,000 people in his school district at once, but that’s another story!) She is also blessed to be the stepmom (or “bonus mom”) of two daughters, one who is also impacted by a disability. This means Amy has had to navigate many challenges and complexities that can occur with divorce and the blending of a new family.

Along the way, she’s had many experiences with two common systems: school and healthcare. This article will focus briefly on custody, but more importantly, the co-parenting aspect of Individualized Education Program (IEP) meetings and healthcare appointments.

One general piece of advice, before the particulars, and relevant to all styles of parenting – whether single parenting, step-parenting, or co-parenting – is to take care of yourself through the process. Some of you might be thinking, “Self-care – I don’t have time for that!” The truth is, you probably don’t.

But, the reality is that “self-care” can be defined in multiple ways AND it affects your ability to parent. The process of moving forward after a divorce is also not linear. It is cyclical, and there will be some setbacks. It is important to adjust your expectations and the expectations you have of your child. Recognize what you can actually change and what you cannot.

Types of Custody

There are two basic types of child custody: sole and joint.

Sole custody can be ordered by a judge or just agreed upon by parents. If one parent has sole custody, then that parent makes all custodial decisions, including medical and educational determinations.

On the other hand, joint custody must be agreed upon by both parents prior to signing a divorce decree. In this custodial arrangement, both parents make the decisions together. Sometimes the divorce decree can specify who makes the final decision if there is disagreement on an issue, such as an educational or medical issue.

People do not always seem to understand what “sole custody” means. Some people think it refers to the other parent not having any parental rights, while others think it means that the non-custodial parent can’t communicate with providers or teachers. This is NOT the case in a lot of states.

The bottom line is that you must check with an attorney about your rights and responsibilities as the custodial parent, as it depends upon where you reside. If you do have sole custody, it is also important that you not make the mistake of thinking you’re responsible for the decisions pertaining to your child that occur at the other parent’s household.

This article is not meant to take the place of advice of an attorney. We highly recommend working with a family law attorney to understand your legal rights and responsibilities with respect to custody and parenting time issues.

Many family attorneys offer consultations, or you can seek help through the family court system with the aid of a mediator. A mediator does not give legal advice for you specifically; again, it’s helpful to have an attorney who can review anything the mediator drafts so that you have a clear understanding.

Types of Co-Parenting – Loosely Defined

1. Cooperative co-parenting: This is when the parents work together and agree on the child’s needs – which are a priority – and the parents agree on the ways to meet those needs. They can effectively communicate with each other through a variety of communication modalities. Both parents actively take part in all parts of the child’s life, including education, medical, and extracurricular activities. This custodial arrangement results in conflict generally being lower between the parents and allows them both to effectively communicate with others about their child.

2. Conflictual co-parenting: Here, the parents do not agree on the child’s needs or how to support these needs. They are not in agreement on much of anything, and as arguments manifest, the parents use the child as a go-between; the child often notices or senses the current and residual conflict between them. Sometimes, one parent will talk about the other parent in front of the child. Parental alienation can occur, which is where one parent tries to restrict the child’s relationship with the other parent. False allegations can sometimes come up, as well.

3. Parallel co-parenting: This is when the parents use completely different styles of parenting. They might agree or disagree about their child’s needs, but they do not let those differences affect the child directly. They recognize that time with the other parent is valuable and respect

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concerns.” Sometimes one parent has a different perspective than the other parent with respect to the disability or its impact on the child. This difference in perspective can occur even if the parents are not divorced or separated!

• Make sure the team knows who can make legal decisions. This is especially important when considering and signing forms related to permissions, consent, evaluations, written agreements between parent and district, permission to excuse a general education teacher, modified diploma, etc. In a sole custody situation, make sure the IEP team members know who has the decision-making power when each issue comes up.

• Let the other parent speak during the meeting, even if you disagree with their opinions.

• Notify the IEP team if you will be bringing someone knowledgeable about the child to the IEP meeting. This advice applies regardless of whether or not the parents are separated or divorced.

• Ask the IEP team or other school staff members to make suggestions about parenting time.

• Ask the team to make medical recommendations like types of mediation to consider or therapies that may be useful.

• Engage in conflict with the co-parent via emails that have school staff members included in the email threads.

the differences in parenting. Communication is minimal between the parents. This might be more common if one parent moves away and only has parenting time during summers or holidays.

Whichever type of co-parenting situation you have, it is most important to remember to keep the child’s best interests at the center of all relationship interactions.

Keep in mind that everything said or done can impact your child; it is up to the co-parents to determine whether that impact is ultimately positive or negative.

IEP Meetings – Do’s and Don’ts for Co-Parents

• Inform the school team about current litigation or recent changes in households (moving, new partners, new siblings, new medical diagnoses, etc.) as this affects your child and their ability to access their education.

• Let the team know about current parent concerns at both households. This can be specified in the IEP itself in a way such as: “mother’s parent concerns” and “father’s parent

Engage in conflict with the other parent during the IEP meeting. (Remember, it is ok to ask for a short break if you need one.)

Health / Medical Appointments – Do’s and Don’ts for Co-Parents

• The Board of Licensed Social Workers in Oregon has an online license search at https://www.oregon.gov/blsw/pages/index.aspx

• The Board of Licensed Professional Counselors and Therapists in Oregon regulates the licensure of counselors and marriage and family therapists. Search at https://www.oregon.gov/oblpct/pages/index.aspx

• Provide timely updates to the other parent on any medical changes regarding new diagnoses, prescription changes, vaccines, illness, etc. The other parent needs to have all of the current medical information.

• Update the other parent on changes in medical providers, including doctors, dentists, therapists, and any others.

• Update providers on changes in insurance and provide the providers with a copy of the divorce or separation decree. If you have sole custody, it is your responsibility to notify providers AND request if they have a system in place to communicate with the other parent. This must be done, unless parental rights have been terminated.

• Follow the doctor’s recommendations and treatment plans.

• Make sure all of the medical providers communicate with the other parent about treatment plans, prognoses, and any other current medical information.

• Washington State Department of Health has an online search option for counselors, marriage and family therapists, clinicians, and other service providers at https://fortress.wa.gov/doh/providercredentialsearch/

If there are very specific issues that need to be addressed –such as a change in custody – it is important to have that issue evaluated by a credentialed professional. There is a legal term often used – “best interest of the child” – which can mean many things to many different people.

If you need the legal system to decide what is in your child’s best interest, this is not something to do alone. Consult an attorney who has a lot of experience in child custody and parenting matters and lean on their expertise to help you.

Generally, the best advice we can give is to be informed and work as collaboratively as you can with your child’s co-parent. At the same time, make sure that the school district staff are informed as to who actually has decision-making powers. Also, ensure that school staff know who has the right to be informed of educational matters, whether they are decisionmakers or not.

• Make medical appointments with providers that are not familiar with the child. If you are the non-custodial parent, you do NOT get to make non-emergency appointments.

• Ask medical providers to make recommendations about parenting time - that is not their area of expertise.

• Ask medical providers to withhold information from the other parent or to NOT communicate with the other parent.

Summary

There are a variety of professionals who can help navigate whatever type of co-parenting relationship you have and the related issues that arise. Make sure you feel comfortable talking to the provider about the concerns and questions that you have. If you feel like a provider is not helpful, then try another one.

A word of caution: Please make sure your professionals are credentialed or licensed in their field. You can check this information in most states by doing a search through the state’s website. Here are a few examples:

Diane Wiscarson, is the founding attorney of Wiscarson Law, the only firm in Oregon with a primary practice area of special education law for families, and has represented thousands of families of special education students in Oregon and Washington. www.WiscarsonLaw.com

Amy Dorlon is an advocate at Wiscarson Law, where her goal is to educate families and districts on the many aspects of disability. Find more information at www.WiscarsonLaw.com

Everyone deserves a full and meaningful life. PEACE can help you and your child have the life you both dream of.

Multnomah County Intellectual and Developmental Disabilities Services Division (DDSD) is a part of a statewide services delivery system. We provide case management services to adults and children and help individuals and families choose and plan services and supports to live a healthy, safe and productive life.

Services that may be available depending upon eligibility:

 Case Management

 IEP Assistance

 Family Support

 Employment

 Transportation to work

 Supported Living

 Residential

 Career Discovery

 In-home Support for Children

 In-home Support for Adults

Want more information?

Providing guidance, training & support around disabilities 9414 NE Fourth Plain Rd., Vancouver, WA 98662 360-823-2247 • www.peacenw.org

https://multco.us/dd 503-988-6258

AUTISM EMPOWERMENT A Celebration of Strength, Resilience, and Unity

by Karen Krejcha

Acceptance for all abilities, our guiding light, Unveiling gifts and talents, shining bright. Together in community, we rise above, I gniting hope, sharing selfless love. Supporting dreams, we stand as one, Making advocacy waves until our work is done.

The creation of this acrostic poem, “Autism Empowerment” was born out of a deep commitment to celebrating the strength, resilience, and unity of the autism community. Autism Empowerment is not merely an organization; it is a calling, a passionate movement that echoes through the lives of autistic youth and adults worldwide. Together, we embark on this journey, striving for acceptance, enriching our collective experience, inspiring positive change, and empowering each other to reach new heights.

Embracing differences, so each of us thrive, Marching forward together, side by side. Power in unity, our strength unveiled, Open hearts and voices, with passion uncurtailed. We empower in wisdom each unique soul, Every person plays a crucial role. Reaching heights we've never known, M aking every heart and mind our home.

Empowering each other, that's our creed, Nurturing each society member’s purpose and need.

Together, we create a brighter world.

Acceptance is where it all begins, for it is through the lens of acceptance that we truly see the unique beauty within every autistic individual. This is the cornerstone of Autism Empowerment, as we Acknowledge the diverse gifts each person brings to the world.

Enrichment follows in its wake, an ever-expanding journey of growth, learning, and celebration. It is here we Embrace the wonderful differences that make our world so vibrant, understanding that diversity is our greatest strength.

Inspiration flows from the hearts of those who have embraced acceptance and enrichment. It is the Spark that Ignites positive change and fuels dreams. At Autism Empowerment, we believe in the power of Inspiring individuals to believe in themselves and their potential.

Empowerment is the ultimate destination, where individuals on the autism spectrum are encouraged to take flight, to be the authors of their own stories. This is where we Enable individuals to chart their course, build their futures, and transform their lives.

In the company of kindred spirits, we create a brighter world, a world where every individual’s light shines brilliantly, just as they are. This is the legacy of Autism Empowerment, a testament to the enduring power of unity, acceptance, and love.

May our shared commitment to acceptance and empowerment continue to illuminate the path forward, as we walk hand in hand toward a future where all abilities are celebrated, and every person’s potential is unleashed.

Yours in Empowerment, Karen

Empowering Families Through Special Needs Planning An Interview with Attorney Eva Luchini

By Karen Krejcha

Eva Luchini is an estate and special needs planning attorney in Clark County, Washington with a passion for advocacy on behalf of individuals who experience life with Intellectual and Developmental Disabilities (I/DD). She is also a fierce advocate for their families.

Eva is a member of the Academy of Special Needs Planners. She also serves on the board of People Empowered and Communities Enhanced (PEACE NW) and previously served five years on the governing board of the Washington Developmental Disabilities Endowment Trust Fund.

In this exclusive interview with Spectrum Life Magazine, Eva shares her inspiring journey into law and sheds light on the critical importance of special needs planning for families in disability communities.

Hi Eva! Tell us a little bit about yourself and your pathway into law.

I graduated from law school back in 1996 and started my career in Los Angeles in business litigation at a big fancy law firm. There was nothing to be passionate about there. I went on to try various iterations of the practice of law, none of which I felt called toward. I ended up stepping out of my career altogether for about eight years, during which time I adopted two high-needs babies and moved to Washington.

In 2012, I found my way to the Clark County Parent Coalition Leadership and Advocacy Training Program. Darla Helt and Sandy Silveria led this two-year program at The Arc of Southwest Washington. I signed up to learn the various resource systems for the benefit of my own children.

I remember like it was yesterday: Sandy up at the front gently encouraging this room full of exhausted mothers to advocate not only for our own children but all of the disability community. “None of us are lawyers,” she said, “but we need to learn how to advocate.”

I remember looking down at my hands for a bit and realizing that this was the call, the clarion call, to go back to practicing law and use my advocacy skills for this community.

First, I had to pass the Washington Bar exam. I studied at the playground, during naptime, and in bed with a book light next to my sleeping kids. Caffeine made it possible. In 2013, I started work as an estate planning attorney doing Wills and Trusts. Then I added Guardianship and Special Needs Planning.

There was, and still is, so much to learn. Not simply how to write these legal documents; but also, how families will use them and how this planning helps adults with disabilities live their best lives.

What is your legal specialization?

Now in 2023, my practice is focused on Wills, Trusts, and Special Needs Planning. I no longer do Guardianships. Instead, I help adults and their families choose Supported Decision Making as an alternative to Guardianship.

What are the different key services that you offer through your practice?

I offer Wills, Revocable Living Trusts, Powers of Attorney, Health Care Directives, and of course, Special Needs Planning. I help families understand how pooled trusts and ABLE accounts can fit into their plan.

I share everything I know to share with my clients. They leave my office with more than legal documents. They leave with local resources, valuable connections, and ideas for building community.

Please explain the concept of special needs planning and its significance for families in disability communities.

Everyone needs a plan in place to protect their assets and their family. Everyone! But families in the disability community need to make special provisions in those documents to make sure that their loved one doesn’t lose Supplemental Security Income and Medicaid because of an inheritance.

It used to be that people would just disinherit that child. That’s awful. Legions of parents and advocates have pushed the law forward to create the concept of Special Needs Trusts for the purpose of capturing that inheritance while preserving benefits eligibility.

What are the key differences between traditional estate planning and Special Needs Planning, and why is it essential to tailor plans to each family’s unique circumstances?

Both protect your assets and protect your family. Special Needs Planning also protects eligibility for government benefits. The fact is, in “ordinary” families, if the parents pass away without a plan in place, it is not the end of the world.

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The process of probate may be a bit more costly and messy, but everything goes to their kids in the end (likely received in full at age 18).

For our “extraordinary” families, not having an estate plan with special needs provisions leaves the kid with a disability, and the extended family members or community trying to step in and help, with a terrible mess. Assets will get divided among the kids, and any child with a disability receiving government benefits will need to have their account spent down or the inheritance put back into a Medicaid payback trust.

What misconceptions do parents often have about special needs planning and estate planning attorneys?

A misconception folks have is that any attorney can do a proper Will. I mean, yes, likely any attorney can do a Will. A basic Will is not that hard.

Folks may have an Employment Assistance Program through an employer that gives attorney services. That attorney may not actually be an experienced estate planning attorney or have any knowledge of special needs planning. But they’ll take the job, of course.

If your attorney can’t tell you off the cuff the definition and difference between the acronyms SSI (Supplemental Security Income), SSDI (Social Security Disability Insurance), and SSCDB (Social Security Childhood Disability Benefit), then they do not have the required knowledge for special needs planning.

Another misconception is that special needs planning is too expensive. Well, yes, it does cost more than ordinary planning. I spend a lot of time and money each year going to conferences and other programs to keep up with changes in the law. But I also understand how hard it is to build wealth and raise a high-needs child.

Many parents of a child with disabilities are barely able to make ends meet. I will tell my clients the most economical option available that would meet their needs. And there are options.

I myself charge a simple flat fee upfront — so there are no surprises. In certain situations, I will offer a payment plan or a discount.

What challenges might families encounter if they haven’t adequately planned for their loved one’s future?

In addition to the prospect of unnecessary Medicaid reimbursement, failure to plan leaves a terrible mess. Planning sets your family up for order instead of chaos.

Imagine the person who would show up tomorrow if the unthinkable happens. Imagine the person who will put their own life aside to tend to your child or children: food, bills paid, medical appointments, paperwork, etc. This person must find a lawyer to file for probate.

The first thing that lawyer will say? What a shame they didn’t have a Will. This is going to cost more in time, energy and dollars now. Then comes Social Security and Medicaid

wanting to know if this turn of events means the individual on benefits now has more than $2,000 in resources.

If so, then they posit the benefits shouldn’t be needed, as the individual can pay out of pocket for healthcare, food, and shelter. There will be a lot of extra effort to be made to get the individual back on track in terms of benefits, housing, healthcare and more. That mess could have been prevented with proper planning.

How does having a well-structured estate plan provide peace of mind?

We parents do everything we can do to make the lives of our children better. We fight the schools for every resource we can pry out of them. We fight the healthcare providers to diagnose and provide treatments we know are needed. We fight the insurance company to pay for it.

And the job doesn’t end when our child turns 18. Now it’s time to fight to get and maintain benefits over a lifetime. A well-structured estate plan is the necessary capstone to all this hard work. Hopefully, once it is in place, parents can feel peace of mind and relax about at least this one thing. That much I can do for you.

When should parents start thinking about estate planning?

Parents of young children need to designate a guardian for minor children in case something happens to the both of them. That is usually what brings them to an estate planning attorney.

If there is a young child with disabilities who is likely to need government benefits, then special needs planning is also on deck. Depending on the amount of assets likely to go to that child, there are planning options that are more or less costly.

Parents should have at least something in place when their kids are young. They can revisit it when their child with disabilities is nearing 18 and they have a better sense of both the likelihood of eligibility for benefits and the amount of a potential inheritance.

What advice would you give to those who are hesitant about approaching the topic of estate planning with their family?

I suggest attending a workshop or presentation on special needs planning. You do not need to come out of it knowing all the things on the PowerPoint. Rather, you just need to hear the big picture. Your attorney’s job is to walk you through the particulars.

In Southwest Washington, Wise aka GoWise (https://www.gowise.org) and PEACE NW (https://www.peacenw.org) are nonprofits that often host helpful online or in-person trainings. Palladio Group Consulting in Oregon also has useful presentations. (https://www.palladioplanning.com).

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You can also ask an estate planning attorney for a free “meet and greet” (these are usually by phone). A few of us do them. This would not be a time to share the full details of your family situation and get free legal advice. Rather, it is a time to get a sense of the attorney’s level of expertise on both the law and lived experience. Find an attorney who communicates clearly, answers your questions, and leaves you feeling confident about the process.

How can your expertise assist families in maximizing government benefits and resources?

Most estate planning and guardianship attorneys do not dig into the vast maze of ever-changing rules and acronyms around government benefits. I hate when an attorney says, “I know just enough to be dangerous.” That does not sound very helpful, does it?

That said, attorneys can get in trouble if they give out wrong information. For my part, I don’t claim to be a government benefits expert, but understanding government benefits is the heart of special needs planning. I try very hard to learn as much as I can so I can share helpful information and resources with my clients.

For example, I enjoyed this summer’s 2023 Community Summit in Wenatchee, an annual conference in Washington where self-advocates, friends, families, and allies collaborate on transforming systems and building more inclusive communities where people can live self-directed lives.

I learn as much as I can and network with advocates, agencies, and nonprofit experts so that my resources become my clients’ resources. That’s my superpower—I know who to call!

You mentioned Supported Decision Making as one of your legal specializations. How does that tie in with Guardianship and Alternatives in Special Needs Planning?

In 2020, the Washington Guardianship statute changed for the better, thanks to amazing advocacy work by parents and professionals.

Supported Decision Making as an alternative to Guardianship was codified — baked into the law — and will serve the best interests of adults with I/DD who want to build their independence rather than lose it.

The real-life effects are still being worked out by lawyers, judges, and other professionals. Of course, many individuals with I/DD need a guardianship. But many do not. The idea that a child with disabilities needs a guardianship upon turning 18, just because they have a diagnosis and some limitations — that idea is wrong.

I know of a young woman who is employed and married. Her parents did the guardianship years ago when she turned 18 because everyone said that was necessary. Now they want to scrap it for the Supported Decision Making model.

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Photo courtesy of Eva Luchini

That sounds like something that may make better sense here, and I think anyone would agree.

There is a spectrum of abilities and challenges. Each individual, their family and the support they need is different. As for me, I just want to see more options for adults with I/DD.

What are success stories you’ve encountered where specialized planning has made a significant positive impact?

The success for me personally is finding legal work I can feel passionate about.

The success for my clients is the peace of mind they get from completing this necessary and protective planning. In addition to the legal piece, I want my clients to know of anything good and wonderful in our local community that might benefit them and their families.

If my client has a physically active 7-year-old, I make sure they know about TOPSoccer. Spanish speakers need to know about Pasitos Gigantes. Parents of young adults should hear about the Building Independence class with PEACE NW. There is so much good stuff out there!

Success is also working with an individual adult with I/DD who wants to execute their Power of Attorney document as part of the Supported Decision Making model. We sit and chat, often in the client’s home, about all kinds of interesting things—outer space, trains, clocks—before we get to a patient discussion of what a Power of Attorney does. This legal work brings me joy.

What are your goals for the future of the Law Office of Eva M. Luchini, PLLC?

I plan to stay focused on the disability community and special needs planning. In 2024, I will look to hire an office assistant with excellent writing and social media skills. My preference will be someone connected to the disability community.

Sounds great! How can individuals reach out to get connected with your services?

Website: www.luchinilaw.com

Email: eva@luchinilaw.com

Phone: (360) 817-0007

This is a conversation to find out if my style of communication works for you and if my services can be of use to you and your family. Thank you!

Karen “The Good Witch” Krejcha is the co-founder of Autism Empowerment, where she serves as Executive Director. She is the Editor of Spectrum Life Magazine and host of the Autism Empowerment Podcast. Karen was diagnosed on the autism spectrum in her 40s, after the diagnosis of her two children. She has been married to John for over 31 years and is devoted to promoting a culture of acceptance and empowerment within autism communities and worldwide.

Photos courtesy of Eva Luchini

#AskingAutistics

Do You Find Animals Easier to Understand than Humans?

By Lyric Rivera, NeuroDivergent Rebel

One of the most difficult things for me, personally, as an Autistic Person, especially growing up, has always been developing and maintaining relationships with other humans (especially non-autistic humans).

Growing up, some of my best friends were non-human animals of various species - hamsters, tarantulas, frogs, horses, donkeys, birds, cats, and dogs. I’ve even formed bonds with wild animals.

Animals were one of my first special interests (after reading and vocabulary). More than anything, I wanted to understand them and for them to understand me.

Humans are complicated and unpredictable, but animals are much simpler. What you see is what you get with an animal, they don’t lie, and as long as you treat them with respect, they will do the same for you (unlike people).

Most humans learn to read human body language and facial expressions naturally (or so I’ve been told), but I didn’t. It never occurred to me to look for information on the faces and bodies of the humans around me (until after my Autism diagnosis at the age of 29).

I have only just started learning about human body language and facial expressions over the past few years (since this did NOT come naturally to me). However, due to my love and obsession with animals, I did learn to read animal body language as a child.

I can read the body language of almost any animal reliably – anger, fear, stress, unease, joy, stalking, and confidence all have very specific looks that are surprisingly similar species to species (if you know what you’re looking for).

Joyful and relaxed animals have a bounce to their steps. When an animal is timid, it holds its body low, cowering as it tries to make itself small. When an animal is about to bite or attack, you can see the unease and tension building up in the animal like a spring – snakes, deer, dogs, cats, and even spiders have similar tells that they’ve had enough of your crap and you’re about to “get it” (if you’re watching).

Animals “tell you” exactly what they’re feeling very effectively, without using words. Humans will use many words and still say nothing (or not tell you what they really mean).

My best friend in middle school and high school was a dog named Ripley. Ripley and I would go on adventures. He

protected me and kept me safe, and though I was just a child, I tried to return the favor for my friend.

The first living creature I ever loved was Ripley. That dog awoke something inside me that I didn’t know was there for most of my life – the ability to love. Before Ripley, I thought I was incapable of love.

“Love is how you treat people,” my mom would often say... so before Ripley, I thought love was not something you felt but acts of service you provided to others.

I had no desire to perform acts of service for other people (even those I was supposed to love, like my mother and grandparents).

Additionally, people who loved each other tended to miss each other when they were not around. I didn’t miss people when they weren’t around. Growing up, I enjoyed my alone time so much that I felt guilty about it.

Things were different with Ripley. I wanted so badly to get to know that blue-eyed pup, to make him happy, and I even missed him when we weren’t together. During some of the most difficult years of my life, that dog was there for me without judgment. Us against the world.

I’ve never seen humans as the “greater” species compared to other animals. I don’t think human rights are more important than any other animal’s rights – though I understand why humans WANT to think they’re the “most important species.”

I don’t think animals are here “for human consumption” and see humans as animals who often think themselves to be more “special” than they actually are because they talk. ANIMALS TALK TOO. They just don’t use words (unless we teach them).

Unfortunately, most humans are so tuned out that they ignore (and are often oblivious to) the messages from animals and nature.

Ripley wasn’t “just a dog” - he was my best friend, and though he left this earth long ago, his impact on my life will be with me until I leave here. I found Ripley (and almost all animals) easier to understand and get along with than most people.

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#AskingAutistics, continued from page 22

Curious if other Autistics could relate to this experience, I hopped over to Twitter and typed out a question:

#ActuallyAutistic #AskingAutistics – do you find nonhuman animals to be easier to understand than humans?

Of course! I live with cats, I love cats. I found out a long time ago that cats love routine! I love routine! We are made for each other! – @FrancoisOuell15

Grew up on a farm, loved it, especially the pics/ piglettes they were so trusting and emotionally expressive and kind esp if I was down they’d come say hi – @FaeSkruff

absolutely. they communicate clearly without filters and white lies, no touch now? ok.... touch now? great! (cats for example) – Anonymous

Yes and no. Yes they don’t play mind games like humans, but no I often still don’t get what they mean. – Lydian

Responses from #ActuallyAutistic Twitter:

(Editor’s note: Out of respect to #ActuallyAutistic contributors and Twitter styling, tweets have been shared as submitted and are a sampling of many responses. To search #ActuallyAutistic on Twitter, visit: https://bit.ly/askingautisticstwitter)

Yes, and, no. I am drawn to animals and they are to me. I feel calm around animals who are calm (same as humans) But if they are anxious, I am also anxious. I find understanding our respective states, on balance, easier with animals. – Ko ia au Very much so – @ckstackhouse

Yea I do, I like cats and have always felt more connection with cats I’ve had with people I think it’s because I find cats/ animals easy to understand there is no second guessing what my cat means are wants with his vocalises and body language – @Anbukurama

I don’t get socially awkward with cats – @NoNonsenseND

Yes, and I think it’s mostly because of being bullied, ostracized, & gaslit by humans for being Autistic. That’s the environment I had to grow & develop in, so I think my child brain decided it wasn’t helpful for me to try & understand other humans lol – Eve Dissent

I speak cat better than I speak allistic – Jacob Moena

Most animals also treat direct eye contact as aggression, so yes. – BMT, @shinybluething

Absolutely, animals give endless affection and won’t care much about my stims or self-regulating body gestures. – JJ Fox

To join in the conversation, here is the link to the original tweet: https://twitter.com/NeuroRebel/status/1653617331883393026

This article is part of a continuing regular series at Autism Empowerment and Spectrum Life Magazine called #AskingAutistics by Lyric Rivera. To read past articles and get connected with autistic community members, visit www.spectrumlife.org/askingautistics

Lyric Rivera is an autistic self-advocate from Texas who runs the neurodiversity lifestyle blog Neurodivergent Rebel. They are also the founder of NeuroDivergent Consulting. Lyric is known as the pioneer of the #AskingAutistics hashtag, where simple questions prompt open-ended responses that Autistic people can easily chime in with, and invites participants to engage each other in conversations related to the topic. This hashtag connects NeuroDiverse people who would not otherwise have a reason to engage with each other, and fosters collective understanding of the Autistic experience. www.NeurodivergentRebel.com

Photo courtesy of Sensory Tool House

Sensory Tool House, LLC A Haven for Neurodiversity and Inclusion

By John Krejcha

Sensory Tool House, LLC may appear to be a typical brickand-mortar store serving Lacey, Washington, but don’t be fooled by its unassuming facade. Beneath the surface lies a treasure trove of sensory toys and tools that cater to the needs of neurodiverse youth and adults.

Beyond their remarkable inventory, Sensory Tool House boasts a core philosophy centered on inclusivity, underscored by a neurodivergent workforce. They extend their impact through consultancy services, aiding businesses in creating more inclusive workplaces, and crafting sensory rooms that provide sanctuary for sensory regulation. Their innovative “try before you buy” model on the retail side helps customers make sense of their sensory choices.

In our recent conversation with Founder and CEO Katie McMurray, M.ED., CDMS, and Lauren Howard, Director of Resources, we delved deep into what sets Sensory Tool House apart from traditional stores. Join us as we embark on a journey to uncover the magic behind this exceptional establishment, where sensory support and inclusion flourish in every corner, enriching lives not just in Lacey, but throughout the entire Northwest and beyond.

Hello Katie! Hello Lauren! Thank you so much for taking the time to talk with us. What is Sensory Tool House?

Lauren: Sensory Tool House, LLC (STH) is a retail store in Lacey, WA that sells sensory tools and equipment and adaptive technology items. Our mission is to provide a neurodiversity-affirming environment to explore sensory-supportive equipment and tools while building a friendly, safe, and inclusive community for all.

The store includes a permanent sensory room open to the public, an adult-sized changing table to increase access to dignified changing in the community, all LED lighting, sensory-supportive design elements, and more. Our staff includes over 70% neurodivergent individuals with professional experience in education, mental health, and community service fields as well as the lived experience of being neurodivergent adults.

Katie: Sensory Tool House is also the only retail and community gathering place that focuses on serving those who are neurodivergent and disabled in Washington state. We have created an environment where there are no apologies for being yourself.

Having visited STH with my family, I agree it is quite a welcoming place! Please tell our readers more about yourselves.

Katie: I am the founder and Chief Executive Officer of STH. My work spans many areas, from working as an elementary and middle school teacher to working with adults as a certified disability management specialist. I have a Graduate degree in Guidance and Counseling, where I focused on Sensory Processing Disorder (SPD). I have a continued passion to learn and further support the neurodivergent community.

I am married to my husband of twenty years and have four incredible kids. I am neurodivergent, as well as three of my four children. I understand the challenges of caregiving and supporting loved ones who are autistic and have AttentionDeficit/Hyperactivity Disorder (ADHD), dyscalculia, SPD, and brain differences due to adverse childhood experiences.

Outside of work, you will likely find me doing many Pacific Northwest activities. Exploring the Salish Sea with my family grounds me and is my number one activity. I also enjoy hiking, gardening, running the occasional race, snuggling with my dog, and laughing at all the adventures life brings.

Lauren: I am the Director of Operations at STH. I am a 20-year Army wife. I identify as neurodivergent and all three of my children are neurodivergent as well. My middle son has a dual diagnosis of Down syndrome and autism. He also has a pediatric feeding disorder requiring g-tube feeding for most of his caloric intake. He uses a combination of gestures and words, American Sign Language (ASL), and Augmentative and Alternative Communication (AAC).

I earned a BS in Neurobiology, Physiology and Behavior from UC Davis in 2009. I am an avid volunteer in my civilian and military communities and had the honor of being named 2023 Green Beret Spouse of the Year by the Green Beret Foundation. My special interests are cooking and gardening (though the current condition of my yard is a bit counter-indicative of that!)

What is the genesis story behind STH’s founding?

Lauren: STH opened November 12, 2021 as the first of its kind store on the West Coast, focusing on a try-before-youbuy model of selling sensory tools, equipment, and adaptive

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technology. The idea came to Katie after a friend called her during the COVID lockdown to inquire about a compression swing hanging in her living room. The friend wanted to purchase something similar from a local business and was shocked to find that there simply was not a store she could go to and make that purchase.

That conversation was the beginning of STH. Katie began thinking about all the purchases she’d made over the years online, hoping the items on the screen would match the needs in her home. Far too often, they did not. She started to search and look for other businesses that did. There was only one in all the United States that was close to her ideal place.

Our mission became clear: create a store for people to go and find the items they really needed to help with regulation. By creating a space to experience the items ahead of purchase, customers would be able to ensure the tool met their needs and prevent wasteful spending on ineffective items.

As Katie began to write a plan, she realized that not just anyone could be experts at the items in the store. Employees had to be those with lived experience and knowledge. From each step of the process, a new understanding of what was being created revealed itself and formed what we are doing today.

Was it risky to open up a physical store and consulting business during the middle of COVID-19?

Lauren: Yes! We opened our doors with mask mandates still in place. As neurodivergent individuals, we’re facing statistically higher rates of serious illness in relation to COVID-19. Opening at that time seemed counterintuitive. However, we worked diligently to keep our store clean, our social distancing safe, and meet our customers where they were at to ensure everyone felt safe and supported in our space.

We still have many customers who are masking, and our staff are happy to mask as well if that will enable someone to shop in our store comfortably.

Katie: Aside from the risk of illness, at that time, brick-andmortar stores were closing, and online shopping was the way of life for the unforeseen future. I reached out to my local Small Business Development Center (SBDC) and talked with my advisor about the idea. The best part about SBDC is that the advising is free and confidential, so I knew they would give me unbiased and sound advice.

My advisor, Jennifer Dye, was incredibly supportive and walked me through all the steps to starting a business. She looked at the business plan, financials, and was honest that it was not the best time to open a retail business, but this one was an exception.

Photo courtesy of Shailee Berry Photography

I decided to take the leap, because if I did not, there still would not be a place to try out that sensory swing or test out the weighted hoodie. I wish I could have had that as a parent and as a person who is neurodivergent.

The consulting piece came after the store. Once we opened STH, we realized that so many needed more support than just a tool. COVID opened our eyes that sensory is not just an “autistic” thing or a “neurodivergent” thing. Sensory is a human thing. Sensory systems are a human condition, and we are all regulating.

When life becomes dysregulated, everyone benefits from support at home, in school, in our careers, and out in the community.

Most everyone experienced the need for regulation and many still do because of COVID. This was not something we predicted; however, we are glad to be able to support businesses, schools, and the community with consulting and training.

Let’s talk more about your physical location. What makes it different from other stores?

Lauren: The fundamental difference between STH and anywhere else is that we are a try-before-you-buy store focused on sensory support items and adaptive technology. We are ardently a “sorry-free zone,” meaning that regulatory behavior is never something we want anyone in our store to have to apologize for.

We have a swing area built into the store where shoppers can try any of the nearly 20 swing styles and see which ones they enjoy. All of our fidget tools are out of the box and ready to try. The light-up fixtures and features are charged and turned on so they can be viewed ‘in action’. The compression clothing is on a rack ready to be tried on so that we can ensure a good fit.

The putties, dough, and floam are all open and ready to be squished. The executive functioning tools are out of the box so they can be examined before purchase. Our sensory room contains a number of the large crash pad and floor tile items we offer so they can be used before purchase and the list goes on!

Additionally, the store itself was designed with sensorysupportive and autism-friendly architectural features in mind. From the dimmable LED lights, the directionality of the floor tiles, and the colors on the wall, we take the creation of a welcoming environment to heart.

Customers can shop in-person or online. How do customers test the products you offer?

Katie: A visit to STH is an experience. You can test products. Most are on display to allow the customer to make sure that the fabric is correct, the fidget is soft enough, or sharp enough. To ensure the smell isn’t too much or too little. To ensure

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Photo courtesy of Sensory Tool House, LLC

that the color is not too harsh on the eyes, or the weight of an object is just right. By having the opportunity to test most items before purchase, customers find more success with the tools they bring home.

We also want to ensure that you get the right product for you. Not everyone can visit the store, but if you call us and let one of our team members know that you or the one you care for has squeezed and popped every stress ball you have bought, we may suggest some alternatives.

You may like to squeeze and pop them. Great! We will sell them to you. But, if you are looking for something that might last a bit longer, we will try to find that tool. Often, it is trial and error, but with your information and with some questions from us, we may be able to find an alternative item to help you.

What kinds of items do you offer for sale?

Lauren: Here are a few examples from the many categories we carry:

• Executive Functioning Tools: planners, visual timers, visual calendars

• Fine Motor Tools and Supports: Theraputty. pencil grips, adapted scissors

• Gross Motor Tools and Supports: balance items, bounce boards, balance boards

• Weighted Items: clothing, blankets, lap pads, hats

• Adaptive accessories: shoelaces, socks, underwear

• Fidget Tools: too many styles to list

• Visual input items: projectors, mirror items, bubble tubes, walls

• Swings of various kinds, so many swings!

• Oral Motor Tools: Chew jewelry, vibrating oral motor tools

• Comfort and Relaxation Aids: crash pads, compression seats

• Alternative seating: balance cushions, wobble chairs

• Assistive Technology: adaptive keyboards, switch buttons, switch adapted toys, adapted books

• Books, Puzzles, and much more!

Items range for ages 0-99, as everyone has a sensory system. Our website is at https://sensorytoolhouse.com. We offer local pickup and ship worldwide.

We noticed that Sensory Tool House is an approved contractor with the State of Washington to provide sensory tools and supports. This is great news for people with eligible DDA dollars.

Lauren: Sensory Tool House holds contracts with Washington State DSHS. Clients with eligibility through the Developmental Disabilities Administration or Pre-Admission Screening and Resident Review can contact quotes@sensorytoolhouse.com to get more information to see if we can help them or their loved ones find the tools they need to improve their quality of life.

You also have something unique, a Sensory Room Consulting and Design department.

Lauren: Our Sensory Room Consulting and Design department is led by Gavin Mast. Gavin recently graduated from The Evergreen State College as a clinical mental health counselor with a focus in serving people of diverse neurotypes. He has a background in providing support services for individuals with neurodevelopmental differences and various disabilities. We have done consultations and design for local businesses, school districts, and nonprofit agencies.

We have also provided temporary, pop-up style sensory recovery areas (aka sensory rooms) for large-scale events for the City of Lacey and Capital Mall as well as school events at multiple area schools. The impact of these offerings can’t be overstated.

By providing a space for participants to take a break and regulate, events become accessible to a larger percentage of the population. Participants can attend and enjoy events they previously may not have attended. Increasing access and inclusion for all members of our community in our community is one of our primary focuses at STH. Sensory recovery area provision has been a wonderful way for us to model some of the steps needed to do so.

Over 70% of your staff is neurodivergent. What kind of training and accommodations do you offer employees?

Katie: Our business foresees accommodations and includes them as a culture, rather than an ask. As we develop our processes and procedures, we work towards providing everyone with supportive tools. Processes are written and have visuals. We provide scripts where we see the need, or they are requested. The scripts are available for all, not just the person who requested them.

We practice greeting customers and closing a sale, rather than assuming everyone hired knows how to greet someone coming in the door. We even provide a template for taking a message. All these things sound like items someone should know, but I challenge that. How many kids must take a message on paper from a phone call before they enter the workforce? Most do not.

They have never needed to take a message and write down the time, date, who it is for, the phone number (that is usually already on the cell phone), and message. It is not laziness, disability, or anything other than a skill that was not taught. When we start to provide these training and “accommodations,” everyone, not just those who are neurodivergent, is more confident and productive in their job.

You will see many members of the staff using tools throughout the workday. Whether it is floor staff or back-office staff,

many will wear noise-reducing earplugs or earphones. Some will have chews or fidgets. Others may have a weighted shoulder wrap. What is rare to find is a staff member without a fidget or tool of some kind. I am often the best at “collecting” throughout the day. I often will pick up an item when helping customers or team members and at the end of the day, laugh at the collection I have acquired by my computer.

How else do you support your employees?

Katie: Another way that we are different is we recognize that sometimes we need to step away from the moment of stress, chaos, or mistake. Doing so does not mean that we aren’t resilient, responsible, capable, or excellent at what we do. It means that we are, and we want to continue to be resilient, responsible, capable, and excellent. It is okay for staff to say they need a moment to get fresh air or step into the sensory room, and we respect that without judgment.

I would rather have an employee take two minutes of fresh air and give me 45 minutes of quality, productive, and creative work, than say no to those two minutes and get 47 minutes of distracted, dysregulated, unproductive, foggy work.

We are different because we know we are always striving to get it right, but we can’t get it right without each other.

Every individual who walks through the door, a customer or employee, has a different need and something different to offer to this world. We cannot support each other without first listening, and then we work together to find support and solutions.

We understand you also do Employer and Workforce Consulting and Training for other businesses. What are the topics that you cover?

Katie: One staff member described STH like this: “It is ableist to assume that efforts to support disabled people should be kept within the nonprofit sector. Disabled people are not charity and STH is not doing charity work by centering disabled people.”

We love our nonprofit partners and could not do the work we do without them. Both of us come from many years of work supporting the nonprofit world. There is a need for both, but the statistics are staggering when we look at the reality of the under and unemployment of those who are neurodivergent.

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Photo courtesy of Sensory Tool House, LLC

A neurodivergent person with a college degree is more likely to be under or unemployed than that of another disabled peer. The reality of this shows statistics as high as 85% of people on the autism spectrum are unemployed, which leads to so many other challenges in stability, like housing.

It is inaccessible environments and perceptions of behavior that add to the barriers of gainful employment. It is not the skills and abilities.

When neurodivergent candidates are given unbiased opportunities and reasonable accommodations, there is higher retention, productivity, innovation, and an increase in the company’s bottom line. Yet, this is often overlooked in diversity, equity and inclusion (DE&I) efforts.

Providing reasonable accommodations does not cost a lot. In fact, it is a lot less than turnover and sick calls. When accommodations are provided as part of the culture, even those who are neuronormative (not neurodivergent) benefit.

For instance, fluorescent lights are known to be harmful to eyes and cause headaches and fatigue. For those with more sensitive visual processing, it can be extremely harmful. This causes fatigue, nausea, headaches, eyestrain, distraction, difficulty with concentration and more. However, this also is the same for those who are not as sensitive; it is just not as noticed or understood. When lighting is changed, everyone benefits and there is an overall change in health and performance. This is the same with many aspects of support, like providing visual and narrative instructions.

Barriers to employment start with the hiring process, sometimes with the job listing. Our training can help

employers look at many aspects of their business to make simple changes that can lead to impactful positive change.

We believe that having a basis of understanding what it means to be neurodivergent is fundamental to an inclusive workplace, along with an understanding of all eight of our sensory systems. By starting there, employers and colleagues can have a better understanding of the “why”.

Often, we find that many we work with have moments where they realize their own “why”. Again, sensory systems are a human condition, and just because someone may not be neurodivergent, it doesn’t mean they are not regulating or impacted by their environment.

Once there is an understanding of neurodiversity and sensory processing in the workplace, we can work with employers in a variety of ways. Training and consulting can be customized for each business or taken from our catalog of training, which can be found on our website.

These training offerings are currently being updated and more are being launched soon, so keep checking in. Lauren and I are always happy to talk about what might be best for your company. I am a certified disability management specialist and vocational counselor.

Topics we can help support include hiring processes, workplace environments, reasonable accommodations, communication, and more.

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Photo courtesy of Sensory Tool House, LLC

Photo courtesy of Shailee Berry Photography

Do you have any stories to share about positive customer experiences?

Katie: I don’t feel comfortable necessarily sharing specific stories, only because I feel that those are the individual’s stories to share. What I can share is the unexpected beauty that I have seen when talking with caregivers and parents. I know personally how lonely it can feel supporting and fighting for your child.

I needed to know others have similar but different lived experiences, and I now have that. And so do others. There are often tears of joy from customers knowing they have a place where they can be authentically themselves or let their child be without apology.

I also didn’t realize the impact that my incredible staff would have on my family and others. Not only have I been able to give my child actual role models of college graduates who are autistic, working, and successful, but others have been able to have these conversations too.

There is one story I can tell without permission now that I think further. A woman came into STH to get a toy for her grandchild. She thought we were a toy store (we do have some amazing toys). After learning more about us, she spoke about her experience at her church and a child that was having some challenges in Sunday school.

It was getting to the point that the Sunday school teacher was no longer going to be able to have the child in the class and thus the parents would likely no longer attend church. Sidenote: This is a story that I have heard a lot.

The difference is this woman listened to one of our expert staff members and purchased a couple items after they discussed some of the behaviors. She brought them to the Sunday school teacher to try. SUCCESS!

A few weeks later, she came back and told us the amazing story and how much the tools helped support the child. They are fully engaged and participate in Sunday school now. Because of that, she purchased some more tools to help. The best part of the story is that now the congregation would like to learn more about how to support those who are neurodivergent. They want to be a support to the community. This is what we want to see. Community Inclusion!

That’s wonderful! Speaking of the power of community inclusion, we want to congratulate Sensory Tool House on some of your recent awards.

Both: Thank you! We have been honored to have some amazing recognition. Katie was honored at the Small Business Awards Gala this year as the Washington Small Business Development Center Star Client for 2023.

Lauren was recognized for her dedication to intentionally creating a welcoming and inclusive community for all. She was awarded the Cultivating Inclusion Award in the Business/Work sector for Lewis County.

Sensory Tool House was also nominated for the Thurston Economic Development Council’s Small Business Economic Courage Award for 2023.

Well deserved! What are your goals for the future for Sensory Tool House?

Katie: We hope to see STH expand to future areas so others have access to the same tools and resources as we do here in the South Puget Sound area.

It would be great to see the next store open in a couple of years. We have a few locations we will be looking closely at in WA state, and then from there, we would like to see STH elsewhere.

We are going to be very careful as we move forward because we believe that STH has an obligation to ensure that we are respectful to our communities and those we serve.

How can people visit and connect with you and Sensory Tool House?

Sensory Tool House is located at 5831 Lacey Blvd SE Ste. J., Lacey WA, 98503. Our website is also open 24 hours a day. Thank you for checking us out!

Phone: (360) 915-9457

Email: information@sensorytoolhouse.com

Website: www.sensorytoolhouse.com

Instagram: @sensorytoolhouse

Facebook: www.facebook.com/sensorytoolhouse

TikTok: @sensorytoolhouse

John “Spike” Krejcha is co-founder of Autism Empowerment and serves as Program Director. He serves on the Editorial Advisory Board of Spectrum Life Magazine and is co-host of the Autism Empowerment Podcast

John is married to co-founder Karen Krejcha and is the father of two amazing children and their feisty cat, Zula. While John is the only one in the family who is not on the autism spectrum, he is dyslexic and identifies as a neurodivergent and loving ally.

Creating More Equitable S paces Differentiated Instruction for Students of All Abilities

By Aaron Blackwelder

This article is Part Three in a four-part series on Creating More Equitable Spaces. Read the entire series by Aaron Blackwelder at https://www.spectrumlife.org/cems

Traditional education has previously been designed around the teacher. The classroom was often structured with the teacher in the focal point in front of the classroom with their chalkboard. It was the teacher’s job to teach and the student’s job to learn.

I remember my 10th-grade math teacher repeating this mantra to me. I wasn’t too engaged in his class and tended to get a bit off-task, and possibly a bit disruptive, and he pulled me outside the classroom to reprimand me. The culmination of his speech closed with those very words, “It is my job to teach and your job to learn.”

Twenty-five years later, I know he had it all wrong. It was his job to create relevance and provide opportunities for me to succeed. It was my choice (not my job) whether or not I wanted to take those opportunities.

I know what it is like to have students who are disengaged and disruptive. It can be challenging, and at times, has caused me to question my career choice. However, most of those days were in my early years of teaching.

As I grew as an educator, I learned that disruption and disengagement had to do with a student’s lack of interest or confidence in completing the task. We know that a response to feeling threatened is fight or flight. Well, when a student feels they are given a task that they either cannot do or find no relevancy in it, they resort to fight or flight.

Understanding Barriers to Task Completion

The problem is not necessarily the student. It is the task that is causing the issue. For example, when it comes time to clean out my rain gutters, I feel a bit on edge. First, I hate climbing on my roof as I have a two-story home. I’m not comfortable with heights at all. Second, I despise doing lawn work, so grabbing leaves and sifting through mud is simply repulsive to me.

So, when it comes time to do them, I avoid the task as much as I can and will make jokes about it to help me feel better about not doing it. Ultimately, I will typically call a service to take care of it because I would rather pay someone to do such a grueling task than put myself in such an uncomfortable position.

Accommodations improve Achievability

So, what would allow me to want to do the task of cleaning my rain gutters on my own? Well, I would want to have a scaffold that would lift me to my roof. This would allow me to feel safe as I wouldn’t be crawling around on my roof. And to address my sensory issues around scooping the goop out, simply give me a pair of gloves. As I think of it, I kind of like the idea of doing it myself, and for a moment, I got lost on Lowes and Home Depot’s websites looking at scaffolding and thinking to myself, “Hey, I think I might be able to do this.”

By making the task more achievable, I become more interested and willing to engage. When we do the same for our children, it transforms our classrooms. Disruptions and disengagement go away, leading to students of all abilities who successfully grow and schools that flourish.

With the advent of computers and with the assistance of Artificial Intelligence (AI), teachers can effectively help bring relevance and provide opportunities for all students to thrive in the classroom. Had my 10th-grade math teacher had the tools teachers had today, he might not have needed to have that conversation with me outside his room. Instead, he might have seen a young man eager to learn and deeply engaged in his assignments.

What is Differentiated Instruction?

Because every child is unique, education is a dynamic landscape. Because of this, educators must recognize that every student has a learning journey. Enter differentiated instruction—a teaching approach that acknowledges the diverse learning needs of students and tailors instruction to cater to those individual needs.

The idea behind differentiated instruction is simple yet profound: while all students share the same learning goal, the methods and strategies employed for teaching vary based on student’s interests, preferences, strengths, and challenges.

Strategies for Differentiated Instruction

There are several key strategies that teachers can use to implement differentiated instruction effectively. These strategies provide options for students to engage differently from their peers while working towards the same learning goal.

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• Differentiating Content: This strategy involves presenting students with various difficulty levels with the same material. For instance, in a math class, a teacher might offer simplified math problems for students who are struggling, while assigning more complex problems to those who are more advanced.

• Differentiating Process: Under this approach, students are given multiple ways to grasp the same material. For example, while teaching a science concept, a teacher might use visual aids for some students and hands-on experiments for others to accommodate different learning styles.

• Differentiating Product: This strategy involves letting students demonstrate their understanding through diverse means. A teacher could allow students to choose between writing a research paper, creating a multimedia presentation, or building a model to showcase their comprehension of a subject.

• Differentiating Environment: This approach pertains to varying the learning environment to suit different students’ needs. Some students might excel when working independently, while others could benefit from collaborating in small groups or with a partner.

The greatest barrier to creating meaningful differentiated instruction for students is time. Consider the middle or high school teacher with 150 students. Creating materials that meet the unique needs and interests of each student would be virtually impossible. However, with the assistance of AI, a teacher can generate learning materials that cater to the unique needs of every student efficiently and effectively.

AI Support for Differentiated Instruction

Chatbots, such as ChatGPT and Google Bard, are making it possible for teachers to create quality, differentiated content instantaneously. A chatbot is a computer program or an artificial intelligence system designed to simulate conversation with human users through text or speech interactions.

Chatbots are designed to provide information, answer questions, perform tasks, or engage in casual conversations with users in a way that mimics human conversation. They are being integrated into various platforms such as websites, messaging apps, social media, and customer service systems to help streamline productivity. Chatbots can help teachers meet the unique needs of students in their classroom helping to create customized and individualized learning journeys rather than a one-size-fits-all.

Here are some ways AI can help support teachers:

• Content Customization: AI can assist teachers in tailoring content to various proficiency levels. They can suggest modifications to existing materials or generate new content that aligns with students’ readiness levels and learning goals. For example, AI can provide project ideas to math teachers connecting Taylor Swift to conic sections or derivatives to skateboarding in order to help build relevance.

• Adaptive Assessment: Chatbots can administer adaptive quizzes and assessments that adjust difficulty based on students’ responses. This helps in gauging their understanding accurately and identifying areas where they need more practice.

• Resource Recommendations: Chatbots can suggest supplementary resources such as articles, videos, interactive simulations, and practice problems that align with the current topics being covered in class. This enables students to explore concepts in various ways and reinforces their learning.

• Differentiation Ideas: Chatbots can generate ideas for differentiated instruction strategies, considering the diverse needs of students in the classroom. They can provide teachers with innovative approaches to engage and support students at various skill levels.

• Scaffolded Learning: Chatbots can provide scaffolding to help students progress from simple concepts to more complex ones. They can guide students through a series of challenges, gradually increasing the difficulty level as students demonstrate mastery.

One of my favorite websites that incorporates chatbots and is designed for teachers is Magicschool.ai. It is currently free and provides dozens of tools to help support teachers who want to create custom learning experiences for students of all abilities.

The Road Ahead for Educators

One of the greatest fears in education is whether AI will replace humans in the classroom. Chatbots have the potential to enhance teaching and learning experiences. They are tools that can support teachers to create unique learning experiences for students rather than replace them.

Human interaction, empathy, and adaptability remain crucial aspects of effective education that chatbots cannot fully replicate. Therefore, the future of education is likely to involve a collaborative approach that combines the strengths of both technology and human educators.

Aaron Blackwelder is a Digital Learning Coach in the Vancouver Public School District and coaches high school golf in Southwest Washington. He is the co-founder of Teachers Going Gradeless, and an educational contributor to Spectrum Life Magazine. Aaron has been a Washington State English Teachers Fellow, was nominated for Washington State Teacher of the Year in 2019, and is a five-time golf coach of the year. Aaron is a husband and father of two boys on the autism spectrum, who inspire him to become the teacher who meets the needs of all students. Visit www.TeachersGoingGradeless.com

Ask Spectrum Life

Autism Resources for our Community

October is ADHD, Dyslexia, and Learning Disabilities Awareness Month!

By Karen Krejcha

Dear Spectrum Life:

My child was recently diagnosed on the autism spectrum. I want to learn more about other forms of neurodivergence and learning disabilities. Thanks! Kelly in Clackamas

Dear Kelly,

First and foremost, congratulations on taking the proactive step of seeking information and understanding. It’s a journey that many parents embark on when their child is diagnosed, and it’s a journey filled with opportunities for growth, acceptance, and empowerment.

At Autism Empowerment and Spectrum Life, we wholeheartedly embrace our mission of acceptance, enrichment, inspiration, and empowerment for all individuals, including those on the autism spectrum and with various learning disabilities. We understand that receiving a diagnosis can be a moment of uncertainty, but it’s also an opportunity to explore the incredible diversity of the human mind and the unique strengths and gifts that neurodivergent individuals possess.

To help you on your journey of understanding, here’s a glimpse into some common forms of neurodivergence and learning disabilities, along with links to resources that can offer extended definitions, guidance, and support. Many may overlap with autism and may be diagnosed separately or first, however since autism is on a spectrum and not a one-size-fitsall condition, your experiences will vary.

• Attention-Deficit/Hyperactivity Disorder (ADHD) is characterized by challenges with focus, impulsivity, and hyperactivity. People with ADHD may find it challenging to focus on tasks, follow instructions, or sit still for extended periods. However, they often demonstrate remarkable creativity, energy, and enthusiasm.

Resource: CHADD is the nation’s leading nonprofit organization serving people affected by ADHD: https://chadd.org/

• Auditory Processing Disorder (APD) affects the ability to process and make sense of auditory information. Children with APD may have difficulty following verbal instructions, discriminating between similar sounds, or understanding speech in noisy environments.

Resource: American Speech-Language-Hearing Association (ASHA) offers information on APD and resources to find a speech-language pathologist. https://www.asha.org/

• Dyscalculia is a learning disability related to difficulties with mathematical concepts. Children with dyscalculia may struggle with basic arithmetic concepts, such as counting, number sense, and understanding mathematical symbols. Nevertheless, they can excel in other areas, such as problem-solving and critical thinking.

Resource: Dyscalculia.org has been online over 28 years. https://www.Dyscalculia.org/

• Dysgraphia involves difficulties with handwriting and fine motor skills. Children with dysgraphia may experience frustration when forming letters and struggle with the physical act of writing. Despite these challenges, they often exhibit strong verbal and creative skills.

Resource: National Center for Learning Disabilities (NCLD) is a trusted source of information and support for individuals with learning disabilities, including dysgraphia. https://www.ncld.org/

• Dyslexia is a specific learning disability that primarily affects reading and language processing. Individuals with dyslexia may struggle with decoding words, recognizing sight words, and spelling. Despite these challenges, dyslexic individuals often possess exceptional problem-solving skills, creativity, and outside-the-box thinking.

Resource: International Dyslexia Association: https://dyslexiaida.org/

• Dyspraxia also known as Developmental Coordination Disorder (DCD), is a condition that affects motor coordination and planning. People with dyspraxia may have difficulty with tasks that require fine and gross motor skills, such as writing, tying shoelaces, or participating in sports.

Resource: Dyspraxia Foundation USA: https://dyspraxiausa.org/

• Executive Function Disorder: Executive functioning challenges involve difficulties with organization, planning, time management, and task initiation. Individuals with executive function difficulties may appear disorganized but often possess exceptional problem-solving and creative thinking abilities.

Resource: Understood is an online nonprofit that provides educational resources and support so people who learn

Continued on next page

In each issue, Spectrum Life editor Karen Krejcha answers frequently asked questions about autism-related topics in our community.

and think differently can thrive — in school, at work, and throughout life. https://www.understood.org/

• Non-Verbal Learning Disability (NVLD) is a condition that can impact social and non-verbal communication skills. Individuals with NVLD may excel in verbal communication but struggle with non-verbal cues, visual-spatial abilities, social interactions, and interpreting body language.

Resource: The NVLD Project offers information, articles, and support for individuals with NVLD. https://nvld.org/

• Sensory Processing Disorder (SPD) affects how individuals process sensory information from their environment. Individuals with SPD may have heightened or diminished sensitivities to sensory stimuli, impacting their daily lives.

Resource: The STAR Institute for Sensory Processing offers resources, education, support and a variety of treatment services. https://sensoryhealth.org/

• Visual Processing Disorder relates to difficulties in interpreting visual information. Individuals with visual processing issues may struggle with tasks such as recognizing shapes, letters, or patterns. Nevertheless, they may excel in auditory learning and verbal communication.

Resource: The American Foundation for the Blind (AFB) provides resources for individuals with visual processing issues. https://www.afb.org/

Also take note of:

• Augmentative and Alternative Communication (AAC) refers to various methods and tools used to support communication in individuals who are nonspeaking or have limited speech abilities.

Resources: CommunicationFIRSThttps://communicationfirst.org/ International Association for Spelling As Communication (I-ASC) - https://i-asc.org/

• Giftedness and Twice-Exceptionality: Some neurodivergent individuals may be gifted and talented, and face the unique challenge of twice-exceptionality, where they excel in certain areas but may also have learning differences.

Resource: Supporting the Emotional Needs of the Gifted (SENG) is a nonprofit network of people who guide gifted, talented, and twice-exceptional individuals to reach their goals intellectually, physically, emotionally, socially, and spiritually. https://www.sengifted.org/

Now, let’s delve into the concepts of neurodiversity and neurodivergence.

• Neurodiversity is a concept that recognizes and celebrates the natural variation in human neurological development. It emphasizes that neurological differences, such as autism, ADHD, dyslexia, and more, are part of the normal spectrum of human diversity rather than pathologies to be cured or fixed.

Understanding neurodiversity is the first step in embracing and supporting individuals with diverse learning profiles.

• Neurodivergence is a term that shines a light on individuals whose neurology and cognitive functioning deviate from the perceived norm. These individuals may include those who are autistic, dyslexic, who have ADHD, and various other neurological differences. At Autism Empowerment, we view neurodivergence as a source of strength and resilience.

As we wrap up this exploration of neurodiversity and learning differences, I’d like to leave you with some parting words of encouragement. Your journey as a parent of a neurodivergent child is just beginning, and it’s a path filled with infinite possibilities. Here are some key principles from Autism Empowerment and Spectrum Life that may guide you as you move forward:

H Embrace the Journey: Remember that this journey is not a sprint; it’s a marathon. Celebrate every milestone, no matter how small, and cherish the unique path your child is on.

H Connect with Advocates, Parents, and Professionals: You are not alone on this journey. Seek out support groups, online communities, and local organizations where you can connect with others who understand and can offer guidance and empathy.

H Love Your Child for Their Unique Gifts: Your child has a remarkable set of strengths and talents waiting to be uncovered. Embrace and nurture these gifts, and let your child’s passions and interests flourish.

H Take Time for Self-Care: Caring for a neurodivergent child can be rewarding but also challenging. Remember to prioritize self-care, whether it’s through moments of solitude, pursuing your own interests, or seeking support from a therapist or counselor.

H Embrace Your Faith: Many individuals and families find strength and solace in their faith during times of uncertainty. This has worked best for me personally. Whatever your spiritual beliefs may be, draw upon them as a source of comfort and guidance.

As you embark on this journey, know that Autism Empowerment and Spectrum Life Magazine are here to provide you with a wealth of resources, stories, and insights that celebrate neurodiversity and offer guidance and encouragement. Together, we can create a world where every individual, regardless of their neurodivergence, has the opportunity to thrive.

So, step forward with hope and determination. Your child’s unique journey is a story waiting to be written—one that will be filled with moments of growth, connection, and empowerment. And as you navigate this path, may you find inspiration not only in your child but also in the incredible strength of the neurodiverse community.

With acceptance, enrichment, inspiration, and empowerment,

Exploring Links Between Weight and Disability The Importance of Accessible Fitness

By Ryan Lockard, CSCS*D, CSPS*D

Specialty Athletic Training was founded in 2012 with the intent of providing individuals with disabilities access to fitness services. From my experience working in the field, I knew that there was a need to provide these services. Little did I know at the time how great the need was and the difference that we’d be making in the community.

Today, I want to respectfully discuss a sensitive topic that has concerned people across the United States for several decades. It’s a topic that many in autistic and disability communities are teased or bullied about. It’s a topic many of their parents have been given grief about. That topic is weight. Whether it’s underweight, overweight, or obese, many people do not have a healthy relationship with their scale or their body.

Many of our clients initially come to us because they are looking to improve weight-related health challenges, and they want to do it in an inclusive and accepting environment.

Understanding Obesity

Obesity is defined as having a body mass index (BMI) of greater than 30. It increases the likelihood of someone suffering from heart disease, type II diabetes, or a stroke; the three leading causes of preventable premature deaths in our country.

According to the Centers for Disease Control (CDC), nearly one-third (30.5%) of American adults were considered obese in the year 2000. That number rose to 41.9% in 2017; which has been attributed to our increasingly sedentary lifestyle and the typical American diet. These numbers are expected to increase again when post-pandemic data is released.

Obesity and Disability

Nearly 25% of American adults experience some form of disability. Interestingly, when we consider the statistic that 41.9% of American adults face weight challenges, it’s important to note that adults with disabilities are 57% more likely to encounter obesity compared to their peers. Let’s examine the reasons behind this and the significance of facilitating access to fitness and health professionals.

Risk Factors

There are two known factors that drastically increase a person’s risk for being at an unhealthy weight: lack of movement and inadequate nutrition. Let’s dive into those two areas and discuss reasons why they may occur.

Lack of Movement

Living a sedentary lifestyle has become the norm for children in today’s current generation and it starts at an early age. Only 25% of our youth currently meet the exercise recommendation of the CDC’s recommendation of 60 minutes of daily exercise. This can be attributed to the rise of technology and less physical activity during the school day.

For example, a sixth grader’s average screen time is around five hours daily. Can you guess what the average amount of minutes in a Physical Education class is? A measly 98 minutes per week, in contrast to the 300 minutes that is recommended during the school week.

Inadequate Nutrition

There is a simple equation that explains weight gain or weight loss: calories in vs. calories out. A calorie is the amount of energy released when your body breaks down food. On a very basic level, the more you eat, the more you need to burn to stay at the same current weight.

Most Americans eat a very calorie-rich diet, which includes processed foods that taste delightful, with additives that can affect their ability to feel fully satiated. This causes them to overeat and tip the scale into a calorie surplus, leading to weight gain.

Now, this is a broad way of looking at the reason for weight gain. Many of the families we serve also are battling weight gain due to medication, a child or adult’s sensory aversions, and a rigid diet. There may be situations where medications or inadequate nutrition may also lead to unhealthy weight loss. This dramatically compounds the healthy weight issue and leads families to seek services like ours.

It is also important to note that eating disorders and body dysmorphia are common co-morbidities within the autistic community. Do not contribute to bullying and fat-shaming. Although obesity is a medical term, that doesn’t mean people need to keep hearing it negatively. They know they are overweight. What they need is acceptance for where they are at and support for working toward the healthiest version of themselves they can be.

Instead of placing a negative focus by suggesting a loved one “combat obesity” (a triggering phrase overplayed in public health campaigns), try encouraging them to “focus on healthy weight goals” or “learn about weight wellness.” These phrases emphasize the connection between weight and overall well-being.

Continued on page 42

Barriers

There are several barriers that families face when looking for help, but I believe there are two major ones that continue to surface in my experience: knowing services like Specialty Athletic Training exist and the cost for services.

Fitness Industry’s Lack of Awareness

Even today, the disability community is overlooked by the fitness industry. Although our population is at an increased risk of obesity and other health issues, the professional resource list to help them is bare.

The common option many parents try in their local gyms or fitness centers is finding a personal trainer that is open to working with their child. Because most trainers are not trained to work with youth or adults with disabilities, those trainers are going to be unaware of the challenges that our population might face with typical gym equipment or what kind of approach might be best to take with someone who has sensory issues or who needs to talk first for five minutes about Roblox before walking around the track.

IN THIS SECTION

Those trainers’ typical approach to fitness stays the same, and our children potentially end up with a negative experience, which can end up reinforcing any negative feelings they previously had. We need more education across the fitness industry.

Cost Barriers of Adding Specialty Training

There are already a lot of out-of-pocket costs for families raising a loved one with a disability. From numerous therapy appointments to doctor appointments to adaptive mobility equipment, the list goes on and on. Many of the above are not covered or are only partly covered by insurance, forcing many families to pay to acquire the services that their child deserves or to pick and choose which services they may be able to afford.

According to the CDC, autistic children can require an additional $17,000-$21,000 worth of additional care per year in comparison to their neurotypical peers. We are always looking for ways to help offset the cost of our services.

Making a Positive Difference

A lot of what I mentioned above paints a dark and cloudy picture for people living in disability communities. Being predisposed to a higher chance of obesity and other health conditions while facing other challenges that can make it difficult to get on track to a healthier and more enriched life doesn’t feel good. But it doesn’t have to be that way, and it is the reason I founded Specialty Athletic Training in 2012.

Many of our clients come to us with a negative experience with fitness. We take a relationship-based approach and take the necessary steps to set our clients up for a positive experience from the start. Our intake process is different from that of a typical gym, as well as the interactions with clients during their workouts.

Like any other gym, we first begin by scheduling a consultation. We have a phone conversation with the parents to answer any of their questions and get a brief history of their child. Aside from their fitness history, it may include the following: medications, therapies, Individualized Education Program (IEP) information, strengths, perceived weaknesses, possible triggers, sensory accommodations, and any other information that is important. This is followed by an in-person tour of the facility.

The tour allows the family to meet a trainer and get to know what to expect before the first session. This is our opportunity to begin developing a relationship and getting to know each child on a personal level. What are their hobbies? Do they play video games? Survival or creative mode when playing Minecraft? Marvel or DC? We strive to create an environment where they feel safe, accepted, and respected.

This also gives us the opportunity to observe movement patterns and gives us an idea of where to start with training. This is our version of a movement screening. Our clients typically are continually going through assessments and other

screenings for other therapies, often being told what they need to improve on. We can get a pretty good sense of where to start by observing them walk around during the tour.

As with most things, exercises can be categorized as progressions and regressions. We believe in setting our clients up for success and starting them at the appropriate level to only use progressions. By feeling successful from the beginning, their self-confidence and intrinsic motivation soars. That is when the magic occurs.

Benefits Outside of the Gym

The benefits of providing a safe and inclusive gym environment extend well beyond the walls of the facility. Improving our clients’ overall physical health only scratches the surface of the impact that occurs. The increased self-confidence that can be obtained from a positive fitness experience carries over to all aspects of life. It also has a broader societal impact that reaches beyond the family that we serve.

Many of our locations do not only serve the disability community. With the exception of our Vancouver location, we integrate with gyms that align with our vision of creating a safe and inclusive environment for all. Seeing our clients doing similar exercises and sweating alongside the other community members helps destigmatize disability and promotes an accepting atmosphere.

Future of Fitness

Healthy weight management is one of the leading health issues that is facing our country and will continue to be unless we change something. Having a healthy body composition that supports overall wellness begins with moving our bodies more and living healthier lifestyles.

Resources cannot continue to be limited for autism and neurodivergent communities. We will continue advocating for safe and inclusive environments to help everyone live healthier and more enriched lives.

Ryan Lockard is the Founder and CEO of Specialty Athletic Training, a personal training company located in the Portland Metro area and Central Oregon that specializes in fitness programs for children and adults with disabilities. He is a Certified Strength and Conditioning Specialist (NCSA), Certified Special Populations Specialist (NSCA), and has served on the board of directors for the Autism Society of Oregon and the Autism Society of America. He can be reached at Ryan@SpecialtyAthleticTraining.com or www.SpecialtyAthleticTraining.com

Photo courtesy of Mary Rebekah Moore Photography

#AskingAutistics Do Medications Work Differently for Autistic People?

By Lyric Rivera, NeuroDivergent Rebel

When I was a kid, I had a mystery digestive problem (that I found out was neurological as an adult after I learned I was Autistic), resulting in many examinations, treatments, medications, and early exposure to medical gaslighting.

Medication after medication for my stomach did nothing helpful (because my problem wasn’t my stomach). Not only did they not help, the medications often had alarming side effects that we were assured were “rare” – but not rare enough that I wouldn’t experience them (and some that weren’t even listed).

When nothing worked, and the doctor was out of ideas (because my stomach was physically fine), eventually, I was discharged with a misdiagnosis of “IBS” or “Anxious Stomach,” as it was explained to my mother.

It was a non-answer. We had several prescriptions, all with horrible side effects and no relief.

Over the years, I’ve also had the misfortune of learning that other types of medication also don’t seem to work for me as expected (such as antibiotics and painkillers).

I’m allergic to most antibiotics (same as my mother) and have been covered in SEVERAL head-to-toe rashes when doctors insisted something they gave me would “be safe,” even for people who are sensitive to antibiotics.

Painkillers do nothing for my pain and make me woozy, and will cause me to throw up. I can’t keep them down long enough for my stomach to dissolve them. They pop right up out of me (as if my body is rejecting a toxin).

Since I first learned I was Autistic, one of the most interesting things to me has been in discovering many things I thought were “strange” or “unusual” about myself that actually are fairly common Autistic experiences (such as sensory processing differences, my tendency to hyperfocus, communication style, and even how I experience pain, and the way my body reacts to medications).

I have a fairly severe medical phobia that has been worsening over the years, becoming much more troublesome during the COVID pandemic.

I can’t even look at medical things on TV without my heart racing. If I get a shot or have blood drawn, I may vomit, pass out, or both. Though doctors and medical treatments have always made me nervous, they didn’t always make me puke and faint – but medical trauma will do that to you.

When I go to the dentist, I take NO pain medicine at home after extractions and stay awake with no gas for the procedures. They also have to monitor me after administering the local numbing agent (because I have had some big reactions to those, almost passing out on the dentist’s table).

I asked my community about this particular experience, if others were having difficult or bad reactions to medications, making access to medical care difficult, and my readers’ overall response was a resounding “Yes” this is something MANY of my Autistic readers are struggling with.

Many of my readers also reported, in addition to being Autistic, having other conditions that exposed them to chronic pain with little to no relief (since many of us struggle to take medications designed for and tested on non-autistic minds).

Why isn’t more Autism Research focused on Autistic Health and how it differs from the health of non-Autistic People?

h Why aren’t we looking into solutions for Autistic pain management since so many of us are struggling to find relief?

h Why are so many of the research projects about Autism today STILL focused on why Autistic People exist and the “genes” that cause Autism?1

h Why aren’t there MORE studies into the various causes of these differing medication reactions?2

Hopefully, by starting this conversation, we can inspire more people to pay attention to this issue that impacts many Autistic People’s quality of life:

#ActuallyAutistic #AskingAutistics - does anyone else have bad reactions to medications/do medications work differently for you? Most of them don’t work as described on me, and I tend to have lots of side effects and allergies to medications.

My doctors are scared to even prescribe anything for me, but that is a problem since I have so many issues. – Ocean

Yep have very inconsistent reaction to sedation. Once woke up on the operating table and often have a reaction hours after being at the dentist when I feel faint/light headed.

– Niall, @NiallEco

Responses from #ActuallyAutistic Twitter:

(Editor’s note: Out of respect to #ActuallyAutistic contributors and Twitter styling, tweets have been shared as submitted and are a sampling of many responses. To search #ActuallyAutistic on Twitter, visit: https://bit.ly/askingautisticstwitter)

Yes same here. I don’t metabolize strong pain meds. They are like water. They do nothing. I don’t freeze either. So teeth removal with no pain relief is brutal. Also stitches too. No migraine rescue meds. None work. Family has weird reactions & we’re all different too. – Anonymous

Most medications work as described on me, but I’m a fast metabolizer; the meds hit faster and the effects dissipate faster than with most people. I also need more caffeine than most people for it to be effective.

– Amaranthe, @IMissCarrie - chai-elemental.ghost.io

I’ve always noticed that I tend to get the really rare side effects from meds but barely any of the super common ones. Most of them barely work for me too – @shaniwulffe

Yep! Also applies to recreational substances. If it makes everyone else energetic it’ll make me sleepy. If it makes everyone else sleepy it’ll make me energetic. – Mog

Absolutely. My allergies list is really long and I usually have to start on really low doses or I can have really bad reactions.

I can’t take NSAIDs for stomach/dying reasons, but none of the ‘big’ pain meds work on me. Oddly, only Tramadol and Tylenol works on my pain. Sucks, because I have SLE, RA, and Polymyositis. –

Matthew Broberg-Moffitt, @brobergmatthew

Absolutely- meds work differently for me ( AuDHD ) and my two AuDHD now adult kids - so they are ALWAYS considered with expert medical opinion and with extreme caution as a result – Bobbi Elman – Autistic Coach, Consultant, and Educator on the Autistic

Experience

There are literally only 2 pain medications I can take that work at all. Many medications I’ve tried for various issues cause weird or rare side effects or don’t work as expected.

– Jamie Bowen

Oh yes! Reactions often vary between no effects and rare side effects. What’s extremely tough is when the doctors don’t believe you or imply the medicine’s effects (or lack thereof) are psychological instead.

– Karen Krejcha, @AmbassadorForAE

To join in the conversation, here is the link to the original tweet: https://twitter.com/NeuroRebel/status/1652760973508325378

References:

1) Zhou, X., Feliciano, P., Shu, C. et al. Integrating de novo and inherited variants in 42,607 autism cases identifies mutations in new moderate-risk genes. Nat Genet 54, 1305–1319 (2022). https://doi.org/10.1038/s41588-022-01148-2

2) Lilja MM, Sandblom E, Lichtenstein P, Serlachius E, Hellner C, Bhagia J, Halldner L. The effect of autistic traits on response to and side-effects of pharmacological ADHD treatment in children with ADHD: results from a prospective clinical cohort. J Neurodev Disord. 2022 Mar 6;14(1):17.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8903657

This article is part of a continuing regular series at Autism Empowerment and Spectrum Life Magazine called #AskingAutistics by Lyric Rivera. To read past articles and get connected with autistic community members, visit www.spectrumlife.org/askingautistics.

Lyric Rivera is an autistic self-advocate from Texas who runs the neurodiversity lifestyle blog Neurodivergent Rebel. They are also the founder of NeuroDivergent Consulting. Lyric is known as the pioneer of the #AskingAutistics hashtag, where simple questions prompt open-ended responses that Autistic people can easily chime in with, and invites participants to engage each other in conversations related to the topic. This hashtag connects NeuroDiverse people who would not otherwise have a reason to engage with each other, and fosters collective understanding of the Autistic experience. www.NeurodivergentRebel.com

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Do You Have Interoception Issues? Making Sense

of the Signals from Within

By Dr. Anson Service, Psy.D., LMHC aka Neurodivergent Doctor

Understanding Our Senses

Are you a person who is always hot, sweating profusely for seemingly no good reason? Do you strip down the moment you walk in the door and hope that your child doesn’t have an unexpected friend over? Or, maybe you’re like me: constantly cold and can’t seem to heat up?

Do you forget to eat? Are you often dehydrated because you don’t feel the need to drink? Are you one of those people who dresses in an unexpected way for the season? Wearing shorts and tee shirts in 38-degree weather, for example, or hoodies in the blazing summer sun?

If you have answered “YES” to any of these, you may be having difficulty with one of your senses. But which one?

The Five Familiar Senses plus One: You have heard of the five senses, you know, touch, taste, sight, hearing, and smell. And then there is also our sixth sense (but not the one our little friend Haley Joel Osment taught us about in The Sixth Sense. He thought he saw dead people.) Our actual sixth sense is called our vestibular sense, which is about balance and posture.

Beyond the Basics: But wait, there is more! Our seventh sense is called proprioception, which is our ability to know where our body parts are in the space around us. People who struggle with this may bump into things, have unexplainable bruises, and difficulty knowing where their body parts are relative to their other body parts. Think tripping over your own feet, accidentally walking into walls, or smacking your hip with your own arm.

The Eighth Sense - Interoception: This is a person’s conscious or non-conscious sense, or awareness of what is going on INSIDE their body. Interoception problems not only have to do with things like body temperature regulation, not recognizing hunger and thirst, etc., but they might also include issues like bladder control problems, extreme fatigue, difficulty properly interpreting emotions, or getting hurt or burned without noticing right away, and many other problems.

Interoception’s Impact on Daily Life

From Panic to Anxiety: Interoception has a hand in controlling your autonomic motor system, which includes breathing, intestinal functions, blinking, heart rate, eye dilation, and more. This is also the main mechanism for our fight-or-flight response system.

Think about that for a moment. This is the main mechanism for our fight-or-flight response and if you have difficulty with this, it can lead to states of panic and anxiety more often.

When you feel panic, you may stand out to others, which for some is extremely uncomfortable, and that may prevent you from going into public places with confidence and ease. This anxiety may play a role in so many other things that are common traits of autism.

This one sense is tied to so many issues. WOW! In my opinion, it is not discussed enough. I strongly believe education about traits and features of autism is vital. So, let’s break this down.

The Complexity of Interoception

We have sensory receptors throughout our body, in our muscles, skin, joints, even our bones. A whopping 90% of these are what are called “free nerve endings” located in the outer flesh and skin.

These pick up on sensations and send signals to our brain, and in turn our brain figures out how to regulate many of our organs and functions which keep us in a state of “homeostasis”, which is just a fancy word for balance within the body. “Homeostasis” helps us “prepare” ourselves for everyday interactions and helps us interact well with others.

When a person has challenges with their eighth sense, interoception, they can experience lower self-awareness, problem-solving difficulties (common with Attention-Deficit/ Hyperactivity Disorder (ADHD) as well), challenges with looking at other people’s perspectives, social understanding problems, cognitive inflexibility, trouble deciphering where feelings of empathy are coming from, and emotional recognition and regulation problems.

A person might experience a rapid heart rate at inappropriate times. They might experience heavy breathing, but hopefully not while standing next to someone in line (which might be kind of awkward for everyone). They may wet the bed into later childhood.

Why do so many autistic individuals have a problem with this? Why are some struggling with less while others experience more of it? Isn’t that JUST LIKE AUTISM! Just when we think we have figured something out, half of the autistic people have the opposite experience. Autism is a multidimensional phenomenon and our understanding of it is in its infancy.

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No Two Autistic People Present the Same

Some of the difficulties with autism and interoception are that no two autistic people present the same, so drawing generalizations can be difficult. Many autistic people have diminished interoceptive abilities but we do not necessarily know why they experience it more often than the general population.

There is also research that suggests that interoceptive awareness can actually be heightened when depression and anxiety are present (Paulus & Stein, 2010)1. This means some autistic individuals who also experience anxiety, or depression, or both, may actually feel their internal cues more which causes completely different types of problems (Arch & Craske, 2006; Cioffi, 1991; Flink, Nicholas, Boersma, & Linton, 2009; Spek, van Ham, & Nyklicek, 2013)2

Temperature Regulation

Body temperature regulation problems seem to be a very common trait within our neurodiverse nation when I asked actual autistic individuals about it on social media. Temperature regulation is supposed to be automatic, and it is supposed to change slightly depending on the ambient temperature.

The temperature of the body is mostly regulated by information passed back and forth between the

hypothalamus part of the brain and the skin. When your body is exposed to different temperatures, your body, using this system, is supposed to balance your internal body temperature with temperatures outside of you. When the hypothalamus is unable to do its job effectively then your body can overheat or be too chilled.

Many autistic individuals have trouble with this because their body and brain are having a hard time picking up on or relaying that information between the hypothalamus part of the brain and skin, and as a result they can experience higher or lower core body temperatures. This is usually associated with sensory processing issues, but as you see, this flavor of interoception plays a big role.

Confusion with Labeling

Autistic people may not feel pain as much or can’t tell when they are fatigued because their body is not processing that information well. It can also give the wrong sensations, such as numbness or itching instead of pain, or vice versa. A simple bug bite that itches can cause pain for some while others will not even notice it.

Interoception problems can be very confusing to an autistic individual, especially as a child. Children learn to label their feelings, emotions, and sensations, and they go through that developmental process of learning how their own little body works based on their experience and what adults tell them.

For autistic children, this can be even more confusing. If they have a mosquito bite and are experiencing pain instead of itch, they may mislabel those two experiences. If they get a cut, it may tickle instead of cause pain, but adults may tell them they are experiencing pain. As you can imagine, this can be both confusing and frustrating for everyone. Years later, the individual discovers the difference between pain and a tickle.

Additionally, some may experience a slight breeze on the back of the neck as refreshing, but for some autistic individuals, such as myself, it can cause physical jerking. In others it causes pain. These experiences can be dismissed by others and the individual may be considered “too sensitive” or may be laughed at or ridiculed for what they are experiencing.

Worst of all is the child who does not have the words or ability to explain what they are feeling and is left feeling frustrated, misunderstood, and helpless.

Parents must work diligently to be aware of what their child is emoting and communicating and constantly assessing whether it matches up to what they are being told by adults. If they feel pain from being exposed to cold, don’t tell them they are feeling something different. Figure this out with them and correctly label what they are feeling.

Continued on page 50

Emotions and Feelings

Do you REALLY feel emotions? Anxiety, for example, is usually fairly easy to recognize because it has a host of well labeled physical reactions that accompany it, such as pupil dilation, increase in breathing, muscle tension, and sweating. Most people say they can have a “gut feeling” from certain people that is like an internal alarm telling them that something is not right. They say they feel “uneasy” and usually point to their stomach and chest area as the place in their body that they physically feel it.

For some who struggle with interoception, they may not associate those sensations with anxiety or distrust, and they may not really associate it with any labeled feeling or emotion, and as a result they may find themselves in troublesome situations. Additionally, if an autistic person has a logical mindset, their logic may override their “gut feelings”. I have heard many autistic people lament, “they told me something that wasn’t true, and I believed them, because, why would anyone lie about something like that?”

I often hear autistic individuals complain that everyone accuses them of being “angry all of the time”. However, we must consider how frustrating it might be to have a body that provides “not enough” or “too much” internal feedback for the situation they are in. They may not be aware of their facial expressions, vocal tone, volume, and stance. They may appear to be angry but are not. Many have told me that repeatedly being told they are angry actually begins to make them angry.

The Build Up

When a person is experiencing something inside and does not respond to it in a way that helps them deal with it, it can build and build, adding to other sensory issues they might be having. It can add to stresses associated with being autistic in a dysfunctional world, adding to the physical and emotional problems that come with sleep problems, work stressors, and more. Adding these up leads to a blow up, meltdown, or shutdown. Too many of those can result in autistic burnout.

So here are tips and resources for how you may be able to improve your interoceptive awareness so that you can improve your experience in life.

1. Multidimensional Assessment of Interoceptive Awareness (MAIA)

There are no tests out there that I am aware of that test interoception. There is a questionnaire that is intended to help you identify the degree of interoceptive awareness that you experience.

This is called The Multidimensional Assessment of Interoceptive Awareness (MAIA). It is short and to the point, and even though it was not normed on an autistic population, it may be helpful to determine where you are on this scale.

I, along with the people at my clinic, completed the MAIA but we were confused on how we compared to the general population that we presumed it was normed on.

After scratching our heads for a while, I reached out to the clinic and was able to talk with the scientist who created this questionnaire. He said that the tool was intended to assess yourself by asking questions related to interoceptive awareness and was not normed on any population.

It is free and online. https://osher.ucsf.edu/research/maia

2. Practicing Mindfulness

I am a huge fan of mindfulness, which is another word for a type of meditation. Choose a part of your body, any part, and just wiggle that body part around while you focus on what that feels like. When you’re done wiggling, lay there and just notice what that body part feels like.

I love being mindful after a yoga pose or workout. This really works. It is easy, but don’t let the simplicity of it throw you off. Try it out for a few minutes for a few days and see if it makes you feel different and more interoceptively aware. There are thousands of YouTube videos about mindfulness. Check some out.

3. Using A Notebook

Another way to practice some mindfulness is to get a notebook and write down what your body experienced

Continued on next page

during a mindfulness exercise. Write down whatever you are feeling, what you felt like beforehand, what you felt like during, and after. Writing it down forces you to make more accurate connections in your mind between body and cognition. Describe what you feel in as much detail as you can.

4. Biofeedback

Biofeedback is a therapeutic technique that uses technology, like sensors that are attached to the body, to provide visual information about various bodily functions, such as heart rate, breathing, etc. It helps connect the brain and body. Researchers have posited that just 20 minutes of biofeedback drastically improved interoceptive accuracy in test subjects.

5. Brain stimulation

Brain stimulation is another technique that can improve interoception. This one can range from being minimally invasive to highly invasive, depending on the type and regimen. It can also run on the expensive side and can be quite a time commitment. Various forms of brain stimulation have been shown to manipulate the brain’s signal processing responsible for interoception.

6. Enhancing Communication with Additive Empathy

Teach your partner or loved ones who you have the most contact with the art of additive empathy. When you are having difficulty expressing your emotions or identifying your physical or mental state, someone skilled in additive empathy can make statements about what they feel might be going on with you.

Example: Let’s say you are in the car, you are starting to breathe heavily, and you start tugging or adjusting your clothing. Some people might say, “What’s wrong with you?” or “Are you okay?” or “Stop freaking out.” But someone using additive empathy might make a statement such as, “I am getting the impression that you are hot, and that coat might feel restrictive.”

It doesn’t have to be a question. Most autistic friends I have don’t like questions. Additive empathy is often a statement. If you are wrong, generally they will correct you with what is going on.

If an autistic individual is sitting on the couch breathing heavy sighs, you might say, “It seems like you are sighing a lot and might be feeling kind of down.” And they can then respond. Try looking up additive empathy online and try it out.

7. Engage in a Sensory Diet

A sensory diet is a carefully designed set of sensory experiences that help a person learn body awareness. There are so many things you can do to learn about your own body and senses using sand play, hair brushing, exploring different textures of cloth, different foods, hot tub, cold showers, letting glue dry on the fingers and then peeling it off, vibrating things, weighted blankets, massage and more.

Example Sensory Diet Activities: https://bit.ly/sensorydietactivities

8. Follow-Up Reading

Kelly Mahler is a licensed occupational therapist, researcher, and professor who teaches professionals, caregivers, and self-helpers how to use evidence-based supports that facilitate discovery and validation of each person’s unique interoception experience. Her book, Interoception, The Eighth Sensory System gives details about how autistic individuals can improve body awareness.

Free resources at https://www.kelly-mahler.com/printable-resources/

9. Follow-Up Viewing:

This article contains excerpts from the video, Neurodivergent Doctor explains Autism problems with interoception. Do you notice what is happening? presented by me through my Neurodivergent Doctor channel at YouTube.

To see the full video, visit https://www.youtube.com/watch?v=-u8VT6nvZEI

To watch other videos on a variety of topics pertaining to our neurodivergent community, search Neurodivergent Doctor at YouTube or visit: https://www.youtube.com/@NeurodivergentDoctor

References:

1. Paulus, M.P., Stein, M.B. Interoception in anxiety and depression. Brain Struct Funct 214, 451–463 (2010). https://doi.org/10.1007/s00429-010-0258-9

2. Schauder KB, Mash LE, Bryant LK, Cascio CJ. Interoceptive ability and body awareness in autism spectrum disorder. J Exp Child Psychol. (2015). https://doi.org/10.1016/j.jecp.2014.11.002

Dr. Anson Service is a licensed mental health counselor, and part of a team that assesses individuals for autism, ADHD, and more at Adventure Psychological Services. Dr. Service has written for various magazines and authored several books and is happy to further educate others on autism and other areas of neurodiversity. He and his wife have raised three young men and are now raising their dog named Luna. www.NeurodivergentDoctor.com

Thriving at Work: My Sensory Accommodations Adaptations Reduce Overload

By Judy Endow, MSW, LCSW

The visual sensory aspects of the way autism plays out for me most of the time means that I get too much information delivered – things are too big, too bright, too bold – typically too much to endure all day.

Practically, this means I need to accommodate my sensory system in a variety of ways. To do this, let’s take one example from my life where visual overload is a pretty constant problem. Here are some things I have found helpful:

Environmental Accommodations for Overhead Lights

Most of the time, I simply do what I need unless it affects others. For example, at work I might turn off the overhead light when working on my laptop. I do not need the overhead light and the bright boldness of it, along with the electronic buzz and accompanying visual fallout. It looks like sparkling dust fireworks in the air – a constant private fireworks show of sorts.

I have an office mate so need to take into consideration her need to see what she is doing so sometimes it doesn’t work well to turn the light off. Because turning off the overhead light isn’t always an option, I have a light cover that magnetically attaches to the frame of the overhead ceiling light. It is there at all times. It cuts down on the visual fallout from the light and cuts some of the brightness. This means I can endure it for a longer time, which is a good thing at work because I can be more productive.

I have also found that I can make other environmental adjustments that, while they are not directly targeted for my visual sensory overwhelm, are helpful. This is because every sensory difficulty I have in my body adds up.

Think of adding water to a glass. Each sensory difficulty adds a bit more water. While each bit of water by itself will not make the glass overflow, when they are added together it can cause the water to overflow and spill out of the glass.

Other things I pay attention to in the sensory department to prevent sensory overwhelm have to do with seating. I do not have a stable proprioceptive sense. This means I must always pay conscious attention to sitting in a chair.

If I sit in a chair with arms, I have to devote less attention to monitoring my body in the chair. If there are no other people around to see me, I use another chair for a footstool of sorts. When I have the back of my legs touching a hard surface and arms on the chair I am sitting on, I need to pay very minimal attention to sitting in the chair. I can really concentrate and get some serious work done! This is because I get the most proprioceptive feedback about where my body is located so I do not need to consciously track it.

If I have the right chair with my legs touching another chair, I have more energy to deal with the overhead light assault than if I am sitting in a way that doesn’t support me well. Conversely, if I do not have the overhead light on, I have more resources to devote to dealing with sitting in a chair that doesn’t support my unreliable proprioception.

There are several more environmental factors that I can adjust, but using these two examples illustrate how to make sure I do not fill up that glass with water too full.

It is important to understand all the various environmental things I can adjust. My adjustability is often dependent upon my various work tasks since they have different locations and different combinations of people that require different sorts of input from me. This means sometimes I can make environmental adjustments and other times I cannot. I do the best I can to remain productive for the maximum amount of hours while at work.

Daily Evening Sensory Integration

Another thing I do to maximize my productivity at work is to make sure my sensory system is in top shape before I walk out of my house each day. This takes some planning, but it is entirely doable. It is the deal breaker for me because even if I can employ all the environmental accommodations I need at work, I still will not be productive the whole day if I do not do this “homework”.

One of the things I do is make sure I have several hours of quiet time the evening before a workday. For me, this means no electronic sounds (something very wearing on my system). I do not listen to music, watch TV, or use any other device that emits sound.

Thriving At Work: My Sensory Accommodations, continued from page 52

In addition, I must rest my visual system. This means I cannot read email or articles online that require scrolling during my couple of hours of evening downtime. What has really helped me immensely is using my phone for email. I can open the email, and if I can read it all on my phone screen, I am able to answer it.

If the email requires scrolling, I don’t even read it, but save it for when I am at my desk. Since I have figured out that the scrolling is the problem with email, I have become more efficient with keeping up with email because I can do all the non-scrolling emails anytime and save the scrolling emails for later. This allows me to be productive during my sensory downtime in the evening.

I go to work where I have an office 2-3 times per week. I work from my home office or travel for my consulting business the rest of the week. Regardless of which work I am doing the next day, I must have a couple of hours of sensory downtime the evening before.

When I do not have this, I start the day at a disadvantage. It is like starting with my glass already half complete. This means I will be less productive from the start. My livelihood depends on taking in information from multiple sources, thinking it through quickly, adding in my understanding and knowledge, and sharing reasonable recommendations in real time – on the spot. I cannot afford to start out with any water in my glass!

Daily Morning Sensory Integration

Another thing I do to make sure my sensory system is at its best, enabling me to be and do my best during the work day, is I set my alarm for 2-3 hours before I need to leave the house in the morning. I need this much time for sensory integration and getting ready for work.

Activities that work best to help me change over time. Currently, I am walking for at least an hour each morning. Sometimes, I include stretching exercises.

Daily, Weekly, and Monthly Sensory Integration

I additionally employ other sensory strategies in a mix that serves my needs. Massage, deep water pressure in a swimming pool or a hot tub, pressure clothing, weighted blankets and various exercise routines have all served me well at different times.

Sometimes, I use a gym or a YMCA pool. Other times, I do various workouts at home. I also make appointments for massage and own pressure clothing, weighted blankets and therapy balls available for use.

I hope by sharing some of my personal examples, others will be encouraged that it is entirely possible to figure out what your sensory system needs to be a high quality, productive worker.

It does take work and diligence, but for me, it is something that can be done.

Daily Blessings

There is also a silver lining. Even though my sensory system gives me lots of difficulty and takes several hours each morning and evening to stabilize, along with accommodations all day long, there is a positive side too! I have recently found out that not all people see the everyday things that I am able to see.

For example, each day, I see airwaves. I see the outdoor air moving in undulating waves. This movement is the result of all things in the atmosphere – heat, light, moisture, wind, etc. I know from having lived a long time that certain sorts of airwaves mean that sunsets over the water will look a certain way.

Yesterday, I knew, based on the airwaves I could see during the day, that the sunset over the lake would include a wide, vibrant, solid red swatch across the horizon. This doesn’t happen very often. I planned my day accordingly so that I could be at the lake for sunset.

Being able to “read” the airwaves I see allows me to know when to be where to take beautiful pictures. It is one of the blessings of my autism. Hope you enjoy my sunset photo.

This article was originally published for Ollibean and also appears on Judy Endow’s blog, Aspects of Autism Translated at www.judyendow.com.

Judy Endow, MSW, LCSW maintains a private practice in Madison, Wisconsin providing consultation for families, school districts, and other agencies. Besides having autism herself, she is the parent of three grown sons, one of whom is on the autism spectrum. Her newest book, Autistically Thriving can be purchased at www.judyendow.com

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