Tag: Autism

Dating on the Spectrum

Posted on by Nicol Walsh

This article is written for older youth and young adults who are neurodivergent, with an emphasis on autistic neurodivergence. It is based on research and the life experiences of autistic individuals, who chose the term “autistic person” rather than “person with autism” as their person-first term.

Definitions:

  • Neurodivergent: when a person’s mental or neurological function is different from what is thought of as typical or normal. It is often used to describe autistic people or people with other brain-based conditions like attention deficit hyperactivity disorder (ADHD).
  • Ableism: when a person, or most people in a society, believes that being normal means not having a disability. This belief results in discrimination against people with disability because they are viewed as “not normal” or “less than normal.”
  • Infodumping: sharing a large amount of detailed information about a topic all at once, without the back-and-forth of most conversations. It’s a term and communication style that is common among neurodivergent people.
  • Stim, stimming: short version of “self-stimulatory behavior.” Repeated movements, sounds, or other actions by people to regulate their emotions, cope with sensory overload, or express themselves. For example, an autistic person might jiggle their leg while eating dinner with a large group of people or in a noisy room.

Brief Overview:

  • Dating while neurodivergent often looks very different than traditional dating, and there are many aspects to be aware of as you seek out a prospective relationship.
  • Ableism can influence attitudes about dating, relationships, partners, and yourself, so it’s important to think about it and try to change those beliefs both in yourself and in your relationship.
  • Individuals with disabilities are at much higher risk for abuse, sexual victimization, and other issues, so it is important to teach boundaries and use precautions.

Introduction

Neurodivergent individuals are rarely shown as romantic partners in the media. They’re often shown as emotionless robots, or as people who can’t connect well with others. Society often views neurodivergent people dating negatively, which can make it tough to think about relationships.

Still, neurodivergent people do find love, long term partners, and start families. However, they may face more challenges in relationships and are at higher risk of being hurt or abused.

If you accept your neurodivergence and disability as a part of who you are, believe in your ability to act, and learn to express your needs and boundaries (your limits), you will have a better chance of having healthy romantic relationships.

How ableism appears in relationships and stereotypes

Ableism is everywhere, and it can have a tremendous impact on your relationship. Even when you are both disabled, you may have accepted beliefs, stereotypes, and expectations that can affect your wellbeing together.

All these beliefs are false. You can be aware of them, and work to avoid them:

  • People with disabilities can’t get better, it’s pointless to try.
    • Like anyone else, people with disabilities need to work on their own self-improvement, especially in the context of a relationship.
  • It’s ok to stereotype people with disabilities.
    • There’s a lot of media with stereotypes about neurodivergent women in particular. You are more than your diagnosis, and people trying to date you based on your diagnosis should try to understand you as a person rather than a negative stereotype. If they can’t see past those stereotypes, you may want to move on.
  • People with disabilities deserve whatever they can get, it’s ok to mistreat them.
    • It is never ok to mistreat another person. People with disabilities can be successful dating and can choose a partner that’s right for them.
  • People with disabilities can’t be in real relationships.
    • People with disabilities can date, form relationships, get married, move in, become sexually active, and start families. It is absolutely possible to form a healthy, happy relationship. Don’t let anyone tell you otherwise.

Why date?

Forming relationships in the 21st century can be difficult. Between navigating dating apps, social media, and shifts in how people look at dating and relationships, it can be hard to know how to approach things. Recent studies show that increasing numbers of young people aren’t pursuing relationships , and with social media sex scams  on the rise, there’s less enthusiasm to partner up. Yet, people still want relationships and it’s important to reflect on your own wants and needs when looking for partner.

Common reasons to pursue dating and relationships include romantic companionship, fun, sexual intimacy, exploring your romantic self, financial stability, and starting a family.

The case for dating neurodivergent partners

Do you want to date someone with a similar disability? Many neurodivergent individuals prefer to date others who are neurodivergent, saying that they tend to understand disability better, they are easier to communicate with, and they often have shared interests and challenges.

However, you may find yourself interested in someone without a disability. In this case you may have a stronger need to know how to advocate for your own needs as someone who has a disability and educate your partner on challenges you face. Self-advocacy, setting boundaries, and having meaningful conversations about expectations, accommodations, and your needs are all skills you can use to help your romantic relationships thrive.

With a neurodivergent partner, relationships are not automatically easy

There’s an old saying: If you’ve met one autistic person, you’ve met one autistic person. It’s true! All autistic people are different. When you are in a relationship with someone, your neurodivergence and their neurodivergence are going to interact, and sometimes, they mesh very well. For example, you both may love the same tv shows and enjoy infodumping about your shared interests.

However, sometimes they may create friction. For example, your partner may prefer to use an electric toothbrush, and you may find the noise horrible. Figuring out how to create fair solutions that meet everyone’s needs is a challenge, but a critical skill for being in a relationship. As you get closer to a person, you discover all the “sharp and rough edges” of their personality and behaviors. At these points it’s good to remember to love your partner as a whole, because challenging traits and behaviors are as much a part of them as the fun parts.

Know what you want, be open and respectful

As you think about dating, it’s important to know what you want from dating, and look for potential partners whose goals match yours. If you want to start a family, but your romantic partner is seeking a summer fling, neither of you may be satisfied with the relationship. Think clearly about what you are looking for and be willing to communicate your dating or relationship goal with the person you are dating.

Realize that things may change, that a “summer fling” might get serious and turn into a “want to start a family.” It’s important to be open about what you want and be true to yourself about your desires for the relationship, while respecting your partner as an individual with the ability and right to make their own decisions and communicate their own needs.

Self-advocacy

Self-advocacy is the ability to speak up respectfully for your own needs. It might be stating that you need your partner to not spring things on you at the last minute, not slurp soup loudly, or to tell you directly when they are upset with you. In turn, you can make sure that when they self-advocate, you are there to listen to their needs and not become defensive.

It’s helpful to be patient, be an active listener who focuses on the other person and responds thoughtfully and kindly especially when someone advocating for their own needs may seem like criticism.

Some things that can help include:

  • “I” statements: “I feel left out when you don’t tell me that you’re unhappy.”
  • Writing things down to share with the other person
  • Scheduling conversations for times when you can both listen but take breaks as needed.

Here is an article from PAVE with more tips about self-advocacy: Self-Advocacy: Becoming an Active Member in Your Community.

Building neurodivergent joy and identity

A big part of being able to advocate for yourself socially is the ability to think of your neurodivergence in a healthy way. This means thinking of it as part of your identity, finding joy in your neurodivergence, and the ability to explain that your neurodiverse behaviors are a part of you. In a society that is not designed for neurodivergent people, they are often stigmatized or seen as wrong or broken. Creating a culture of acceptance in your relationship can help you and your partner see yourselves in a more positive light.

Here are some ways you can do this:

  • Explain your neurodivergent traits and what they mean in your own words. You might say, “I like to stim like this because it helps clear the fog out of my head and helps me get centered so I can relax with you on the couch.”
  • Finding the joy may be difficult in a world not designed for neurodivergent happiness, but being able to infodump, explore pleasant sensory experiences, or stimming together can help build a sense of shared joy.
  • Finally, making neurodivergence part of your identity can be very powerful. By making it your own, and taking pride in it, you take away much of the power of people who would call you broken. By building a healthy sense of identity and ownership of your disability in your relationship, you set yourself up for a healthier view of yourself and your relationship, not as people who are defined by being broken, but defined by being different.

Safety

Safety in a relationship is critical, because if you don’t feel safe in a relationship, it is not a healthy relationship. If you cannot advocate for your own safety needs, it is time to look out for yourself and leave the relationship.

Unfortunately, the rates of abuse in autistic relationships are high.  Some say abusers target disabled individuals because abusers think the disabled person is less likely to leave, others feel that the higher levels of stress in autistic relationships can trigger unhealthy relationship dynamics. It becomes very important to educate yourself on the various types of abuse and keep or build a community of supportive people who can help you if you need to leave an abusive relationship.

Self-advocating for safety: sometimes relationships can start to feel uncomfortable or not safe. You can tell your partner that you don’t feel comfortable and need things to “stop right now.” An example: your partner has started drinking a lot, and you do not feel safe with them when they’re drunk. You want to tell them you don’t feel safe when they’ve been drinking more, and they need to reduce how much they drink if they want the relationship to continue.

One healthy way to set boundaries is to use the ‘If you do X, I will do Y.” method, which focuses on their behavior, and your response. For example, “If you yell at me again like that, I will go to my parents for the weekend.” That way, you set an expectation, and your response is your own. These conversations are difficult, and can be intimidating, but it’s better to address things and come to a resolution, than be stuck in an unsafe situation which may get worse.

Working on yourself as a romantic partner

While your disability can play a large part in your relationship, that doesn’t remove the need to see yourself as a romantic partner first, with your own strengths and challenges. Some of these may be related to your disability, some of these might simply be personal traits.

When you know which strengths and challenges are due to disability, and which are due to personal traits can help you and your partner work through conflicts more easily. As an example, becoming dysregulated and upset when your partner cooks with garlic, a serious sensory challenge for you, may be tied to your disability.

However, becoming upset because your partner wants you to help more with cooking when you’d rather play videogames may be something to work on as a partner.
When you discuss these issues or situations with your partner, a need based on your disability is not something you can change, while choosing to play video games over helping to cook is under your control.


Being a good partner is being able to grow and inspire growth with your partner. When you understand the nature of the challenge, know how to communicate it, and can help figure out a solution that works for everyone, that’s a sign of a healthy relationship and being a good partner.

A final note on this: it can be helpful to find other neurodivergent couples and seek their advice on what works, or a relationship counselor who specializes in neurodivergent relationships. There’s no shame in getting help if you need it.

Challenges

Unfortunately, dating while disabled comes with several challenges from living in a society where neurodivergence and disability are not always supported.

  • Marriage penalty: Due to the limit on assets to receive disability benefits, you may lose your SSI benefits if you get married.  Because of this, many disabled couples do not get married as they would lose their lifesaving benefits.
  • Scams: There has been a marked increase in internet scams targeting people with disabilities. Educating yourself on the various scams and online threats out there is very important. 
  • Lack of trained therapists and appropriate sexual or relationship education: Finding neurodiversity-affirming couples therapy and sex-ed can be difficult. Couples’ therapists may not be trained to understand the experiences of neurodivergent couples. In addition, many neurodivergent and disabled people may not receive sexual or healthy relationship education. Those who do receive this education may find it’s not effective for them (i.e., abstinence-based education) or based around neurotypical relationship norms.

It’s up to the individual or couple to look for community resources on healthy neurodivergent relationships if you need more support or information.

Living your best disabled life together

There’s a scene in the film Tekkon Kinkreet’ where an autistic boy says of his mentally ill brother, “I’m missing pieces, and he’s missing pieces. But he’s got all the pieces I need, and I’ve got all the parts he needs!” This can be a big reality for a lot of disabled couples; you are stronger together and can use your unique abilities to help your partner out. Find ways to use the strengths and skills that come with your disability to support each other.

For example, if someone with ADHD is dating someone with autism and they move in together, the person with ADHD can handle all the unique chores that only need to be done once or twice a year, while the autistic person handles the weekly apartment cleaning. That way the person with ADHD can handle novel tasks that the autistic person may struggle with, while the autistic person does chores as part of a regular routine that they’re comfortable with.

As a couple, you can define your relationship on your own terms. Maybe the yard is messy, or your apartment isn’t as organized as you’d like, but being able to be together and help each other flourish is what’s important.

Finally, it’s important to realize that your relationship is in some ways an act of defiance against a world that would deem it, and you, wrong, strange, or broken. Things will often be more difficult. You may be more likely to be fired from a job or fail in school. You might have communication issues with others, or your partner. You may run into various barriers within your own abilities, or things that are imposed by the larger society. That is why it is important to be patient and understanding, but able to find those special things that bring joy in a way that is unique to your relationship. Joy in the face of stigma is the ultimate act of resistance.

Conclusion

In conclusion, dating while neurodivergent comes with challenges, but that doesn’t mean it’s impossible. In fact, many neurodivergent people go on to have healthy dating lives, and end up forming families together, or figure out ways to create happy relationships with neurotypical partners. At the end of the day, being in a healthy relationship is your path, and you can make it work for you AND your partner, equally.

Online – Awesome Autism Parent Support Group

March 13 @ 12:00 pm – 1:00 pm PDT

Register to Join!

Awesome Autism Parent Support Group – The Awesome Autism Parent Support Group is a community dedicated to providing a nurturing and empowering environment for parents and caregivers of children with autism. The primary goal is to offer emotional support, share resources, exchange experiences, and promote a sense of unity among parents, individuals, and families raising and child diagnosed with autism spectrum disorder (ASD). The group meets online on the 2nd Thursday of the month from 12-1 pm PT.

Highlights:

  • Inclusive and Welcoming Environment: The support group is a safe space where all parents, regardless of their background or experiences, are welcomed and embraced.
  • Information Sharing: Valuable information about autism, including the latest research, therapeutic interventions, educational strategies, and community resources, is shared within the group.
  • Guest Speakers and Workshops: The support group might invite guest speakers, such as autism experts, therapists, educators, and medical professionals, to provide insights and guidance on various topics related to autism and parenting.
  • Emotional Support: The support group offers a platform for parents to express their feelings, frustrations, and joys without judgment.

Registration is required to get access to the Zoom link.

Register to Join!
Free

PAVE P2P Staff

Related Events

Creating Joyful and Inclusive Holidays: Comfortable Social Spaces for Neurodivergent Individuals During the Holidays 

Posted on by Nicol Walsh

A Brief Overview 

  • Social interactions can be particularly challenging during the holiday season due to frequent and overwhelming gatherings. 
  • Neurodivergent individuals who enjoy socializing may prefer calm, predictable settings. 
  • Structured social activities provide a comfortable way for neurodivergent individuals to engage with others, as they offer clear rules and a shared experience. 
  • Family gatherings can be stressful due to interactions with relatives they don’t see often, leading to feelings of overwhelm. 
  • It’s crucial to respect the boundaries of neurodivergent individuals, allowing them to make their own choices about social interactions and providing opportunities for breaks to avoid overstimulation. 
  • Understanding and respecting their social preferences and boundaries, especially during the holiday season, helps ensure neurodivergent individuals feel safe, respected, and included. 

Full Article 

Navigating social interactions can be particularly challenging for neurodivergent individuals, especially during the holiday season when gatherings are frequent and often overwhelming. While some neurodivergent people enjoy socializing, they may prefer calm and predictable environments where they can engage in structured activities. Understanding their unique needs and preferences is crucial for creating a supportive and inclusive atmosphere that allows them to participate comfortably and meaningfully. 

Comfort in calm familiarity 

Neurodivergent people who enjoy socializing may prefer calm, predictable gatherings. They might like sitting with a friend to play video games, quietly working on a puzzle together, or playing board games. When faced with a loud, busy family gathering, neurodivergent individuals may withdraw or seek out one person they enjoy chatting with—someone who genuinely respects and understands their accommodation needs, and with whom they can happily spend time discussing a single subject. This person feels safe to them. However, it’s important to recognize that their safe person might need a break too, so having multiple people that they feel safe with can be beneficial. 

Incorporating structured activities 

For neurodivergent individuals, having structured social activities like board games or group video games can provide a comfortable way to engage with others. Social rules and nuances can often be confusing, making unstructured mingling feel overwhelming and unmanageable. Structured activities offer a more supportive environment for social interaction with the rules clearly identified and a shared experience to drive conversation. Baking together, wrapping presents, and completing holiday crafts are all shared experiences that have clear instructions and goals. These activities not only make socializing more manageable but also add a festive and inclusive touch to holiday gatherings. 

Overstimulation with unfamiliar relatives 

Even family gatherings can feel strange and stressful. Talking to relatives they don’t see often can be tough for your loved one as they work out how to talk and act around people that feel unfamiliar, even if they are family. This can be overwhelming since they have to understand and respond to different social cues and expectations that might not be easy or comfortable for them. 

To help ease this stress, consider preparing your loved one in advance by discussing who will be at the gathering and what to expect. Shared interests can be a great way to connect with others and make conversations more engaging. Tell or remind the neurodivergent individual of interests they have in common with relatives they don’t see as often to help start conversations. Socializing can be challenging, so it’s important to be patient and provide support without pressure. 

Supporting boundaries and choice 

Even with careful planning and maintaining traditions, the holiday season can still be overwhelming. Back-to-back events can be exhausting for anyone, but they can quickly become overstimulating for neurodivergent individuals. Seeing new people or people they only see once a year, having to navigate complex social hierarchies, and often trying to hide their neurodivergent traits to fit in can be very draining. While it is important to encourage your neurodivergent loved one to engage, it’s also critical to respect their boundaries and teach them how to have agency. Agency refers to their ability to make their own choices and decisions about social interactions, ensuring they feel empowered and in control. Allowing them to sit out some holiday parties for the sake of their own wellbeing can be a gift of emotional recharge, ensuring they don’t come out of the season completely exhausted. 

Conclusion 

Recognizing and respecting the social preferences and boundaries of neurodivergent individuals is essential, especially during the busy holiday season. Providing structured activities and allowing for breaks can help them manage the stress and overstimulation that often accompany large gatherings. By fostering an environment of understanding and support, we can ensure that neurodivergent individuals feel safe, respected, and included, ultimately enhancing their social experiences and overall well-being. 

Learn More about Creating Joyful and Inclusive Holidays 

This is part of a four-part series on the topic of creating joyful and inclusive holidays for neurodivergent family members, which began with Supporting a Neurodivergent Family Member During the Holidays. Meeting Neurodivergent Needs While Traveling provides tips and strategies to support neurodivergent individuals during travel to minimize stress. Learn Sensory-Friendly Tips for Neurodivergent Loved Ones to ensure they can enjoy the festivities and participate in making memories. Finally, Comfortable Social Spaces for Neurodivergent Individuals During the Holidays provides strategies for managing stress and overstimulation in social situations. 

Additional information: 

Creating Joyful and Inclusive Holidays: Sensory-Friendly Tips for Neurodivergent Loved Ones

Posted on by Nicol Walsh

A Brief Overview

  • This is part of a four-part series on the topic of creating joyful and inclusive holidays for neurodivergent family members, which began in Supporting a Neurodivergent Family Member During the Holidays and continues in Meeting Neurodivergent Needs While Traveling and Comfortable Social Spaces for Neurodivergent Individuals During the Holidays.
  • The holidays bring various sensory inputs that can be joyful for some but overwhelming for others.
  • It’s important to plan for managing these sensory experiences to help neurodivergent loved ones.
  • Identify or create a calm space where the neurodivergent person can decompress and avoid or reduce overwhelm.
  • Preferences for specific sensory supports should be discussed with the neurodivergent individual.
  • Recognize and normalize self-stimulatory behaviors, or “stims”, that do not cause physical harm to themselves or others as coping mechanisms for managing sensory input and stress.
  • Plan for touch-sensitive individuals by setting boundaries, providing scripts for addressing unwanted touch, and having an escape plan.
  • Foster an inclusive environment by understanding and respecting sensory needs, ensuring clear communication, and seeking feedback from neurodivergent loved ones.

Full Article

The holidays are full of sensory experiences. Flickering candles, holiday music, the aromas of food cooking, the fur on an unfamiliar dog, and the sounds of rambunctiously happy family members all provide sensory input. What is a source of joy for one person may be a cause for overwhelm to another. To help manage these varying sensory experiences, it’s important to plan ahead.

A calm space

Identifying or creating a space where to take a break and still have fun eases the intensity and allows your loved one to decompress. The “veg-out room” usually creates itself, when people go there to relax and watch TV marathons while their stomachs settle after a big meal. By dimming the lights and keeping things quiet in this space, you can quickly and easily build a calming environment for neurodivergent family members to retreat, relax, and rejoin social activities when it is right for them.

Sensory systems and preferences

To reduce the potential for being overwhelmed, your loved one may need to wear earbuds or headphones during social periods or other activities. Similarly, weighted clothing or objects (like blankets or stuffed toys) may provide a sense of comfort and security. Sensory supports are not one-size-fits-all, so talk with your loved one about their preferences. If you notice their preferences related to a specific sensory system, they may be interested in exploring other ways to meet their sensory needs at a later time. PAVE provides a downloadable introducing to The Sensory Systems and How to Meet Their Needs in the article, Giving the Gift of Sensory Regulation, Supporting a Happy Holiday Season for All. Resist the urge to introduce new sensory supports without input from your neurodivergent loved one and especially during the holidays, when there are already many unfamiliar experiences to navigate.

Normalizing self-stimulation

Many neurodivergent people do specific repetitive behaviors to manage sensory input, reduce anxiety, or express themselves. These self-stimulatory behaviors, or “stims”, are ways they’ve learned intuitively to comfort themselves, cope in times of stress, and even express joy. Being able to respectfully discuss and normalize stimming that does not cause harm to themselves or others helps to create a more inclusive environment. Thought-out responses can turn an angry retort into a teaching moment, such as, “Everyone has their own way of being and this is her way of pushing through her discomfort to spend this time with us. She is doing her best and we’re glad she’s here!”

Touch sensitivities

Unexpected touch can be very upsetting, especially those who are touch sensitive. Even those who would usually understand touch sensitivity may cross boundaries during the holidays. When consent to touch can’t be communicated or understood, preparation is critical. If your loved one is touch sensitive, there are some things you can do ahead of time to accommodate and support their needs:

  • Plan an escape route to a place where they can find sanctuary.
  • Remind family and friends of acceptable touch before you gather. For example, “I hope your saving your hugs for me and your fist-bumps for Theo!”
  • Provide scripts for addressing unwanted touch from children, pets, and adults. For instance, telling a child, “I really don’t want you climbing on my lap, but you can sit next to me on the couch and show me your Pokémon game.” Communicating to a pet owner, “I’m feeling a little overwhelmed by Cooper trying to put her head in my space. Can you keep her behind the dog gate?”, can help mitigate the overwhelming touch before it happens.
  • Assemble a team of supporters to gently redirect unwelcome touch and serve as a shield. These family members and friends can step in as needed to respectfully uphold boundaries, such as sitting between your loved one and a reaching child or holding a persistent animal to keep it from jumping on them.
  • Prepare an escape plan by arranging for an individual they feel safe with to pick them up, if their touch boundaries are not respected.

Conclusion

Creating a supportive and inclusive holiday environment involves understanding and respecting the sensory needs of neurodivergent loved ones. By providing sensory supports and clear communication about touch boundaries, we can help them navigate the holiday season with greater comfort and ease. Seeking feedback from your neurodivergent loved one and giving them a sense of agency in determining their sensory supports ensures their needs are met effectively. With careful planning and empathy, we can ensure that everyone, regardless of their sensory preferences, can enjoy the holidays and create cherished memories together.

Learn More about Creating Joyful and Inclusive Holidays

This is part of a four-part series on the topic of creating joyful and inclusive holidays for neurodivergent family members, which began with Supporting a Neurodivergent Family Member During the Holidays. Meeting Neurodivergent Needs While Traveling provides tips and strategies to support neurodivergent individuals during travel to minimize stress. Comfortable Social Spaces for Neurodivergent Individuals During the Holidays provides strategies for managing stress and overstimulation in social situations.

Additional information:

Supporting a Neurodivergent Family Member During the Holidays

Posted on by Nicol Walsh

The holidays are a fun and festive time that can also be overwhelming, especially for those whose brains operate differently from what is typical or expected. This difference is called neurodivergence and it encompasses a variety of brain-based disabilities.

A Brief Overview

Introduction

People often see travel, new food, music, and new social situations as some of the joys of holidays, but those who are neurodivergent can find these experiences overwhelming. This doesn’t mean they dislike the holidays; it just requires some preparation to make the season inclusive and enjoyable for your neurodivergent loved one.

To achieve an inclusive experience, your loved one should feel comfortable explaining their accessibility needs and asking for support when necessary, confident that those around them will respond with understanding and accommodate their needs. Overall, special attention should be focused on providing a sense of agency, which means giving individuals control over their own choices and actions. This includes planning for neurodivergent needs ahead of time rather than improvising and hoping for the best.

Travel

Traveling during the holidays can be particularly challenging for neurodivergent individuals due to changes in routine, unfamiliar environments, and sensory overload. To support your loved one, consider planning travel itineraries that include ample downtime, familiar items for comfort, and clear, detailed schedules to reduce anxiety. Additionally, choosing quieter travel times and less crowded destinations can help create a more manageable experience. Learn more about Meeting Neurodivergent Needs While Traveling in this article.

Sensory Considerations

Sensory sensitivities are common among neurodivergent individuals, making it essential to create a holiday environment that minimizes sensory overload. This can include using soft lighting, reducing loud noises, and providing sensory-friendly activities. Offering options like noise-canceling headphones, weighted blankets, or fidget toys can also help your loved one feel more at ease during holiday gatherings. Some neurodivergent individuals may find certain textures or physical contact uncomfortable or overwhelming. Preparing scripts, promoting awareness, and supporting touch boundaries can help your loved on engage to the best of their ability and personal comfort. For tips to support sensory needs, read Creating Joyful and Inclusive Holidays: Sensory-Friendly Tips for Neurodivergent Loved Ones and download hands-on tools in Giving the Gift of Sensory Regulation, Supporting a Happy Holiday Season for All.

Social Overwhelm

Social interactions can be overwhelming for neurodivergent individuals, especially during large holiday gatherings. Creating comfortable social spaces involves setting up quiet areas where your loved one can retreat if they need a break from the festivities. It’s also helpful to establish clear social expectations and provide opportunities for smaller, more intimate interactions. Encouraging open communication needs and boundaries can ensure everyone enjoys the holiday season. To explore more strategies for supporting your neurodivergent loved one’s social challenges, check out the article: Creating Joyful and Inclusive Holidays: Comfortable Social Spaces for Neurodivergent Individuals During the Holidays.

Routine adaptations

Navigating the holidays can be particularly challenging for neurodivergent individuals when an expected routine does not happen, often referred to as a “routine violation.” Some neurodivergent individuals enjoy doing the same things daily so they feel less distressed by the unexpected aspects of life and better able to cope. For example, eating the same food for breakfast, following the same morning routine, or going on the same walk may help them maintain a sense of stability and predictability. The holidays are full of routine violations, including both fun aspects (like getting presents, which can however cause difficulties around knowing an appropriate response) and more challenging ones (such as unexpected food and not being able to do the things that help you cope).

Planning for routine violations can help, as you can make adaptations that support the individual’s needs. It’s critical to have conversations about what aspects of the routine are the most essential and identify methods to support these aspects with the individual’s feedback. For example, allowing someone to bring fruit bars for their breakfast might be a very easy way to support their daily breakfast routine. Knowing ahead of time that a loved one has a personal routine at a set time every day allows for adaptations in planning, such as driving in separate vehicles or arranging for someone they trust to transport them. Adaptations can support routines, often with little to no impact on others’ holiday experience.

Maintaining holiday traditions that offer familiarity and comfort is also important. Certain traditions, such as White elephant gift exchanges or board games, may be beloved components of every holiday. Much anticipated activities and annual traditions can also positively support routine needs, despite them happening less frequently than daily routines.

Crisis Planning

Sometimes, even with everything going as planned, things can still go wrong. In such cases, a neurodivergent crisis can appear as an individual shutting down or melting down. While a shutdown may be a less disruptive internal experience requiring a quiet space to withdraw to and recover, it is still a crisis. In contrast, a meltdown presents a more challenging situation that may be more obvious and impact others. Having a clear crisis plan ensures everyone knows what to do to support your loved one, where the person can go, and how to keep them safe while avoiding embarrassment or guilt during the holidays. Being prepared can make all the difference in managing these difficult moments effectively and fostering acceptance.

Final Thoughts

While the holidays can be a joyous time filled with celebrations and new experiences, they can also be overwhelming for neurodivergent individuals. By understanding and accommodating their unique needs through proactive planning, clear communication, and providing a sense of agency, we can create an inclusive and enjoyable holiday season for everyone. This involves thoughtful travel arrangements, sensory-friendly environments, manageable social interactions, routine adaptations, and crisis planning, ensuring that the holidays are a time of comfort and joy for all. Empowering neurodivergent loved ones to manage their needs effectively fosters a sense of belonging and acceptance within the family. By fostering an environment of understanding and support, we can help our neurodivergent loved ones fully participate in the festive spirit of the season, creating a better and more inclusive experience for everyone.

Below is an infographic of the information above.

Download this infographic in PDF form

Creating Inclusive Holidays for Neurodivergent Loved Ones

Learn More about Creating Joyful and Inclusive Holidays

This is part of a four-part series on the topic of creating joyful and inclusive holidays for neurodivergent family members. Meeting Neurodivergent Needs While Traveling provides tips and strategies to support neurodivergent individuals during travel to minimize stress. Learn Sensory-Friendly Tips for Neurodivergent Loved Ones to ensure they can enjoy the festivities and participate in making memories. Comfortable Social Spaces for Neurodivergent Individuals During the Holidays provides strategies for managing stress and overstimulation in social situations.

Additional information:

Creating Joyful and Inclusive Holidays: Meeting Neurodivergent Needs While Traveling 

Posted on by Nicol Walsh

A Brief Overview

  • This is part of a four-part series on the topic of creating joyful and inclusive holidays for neurodivergent family members, which began in Supporting a Neurodivergent Family Member During the Holidays and continues in Sensory-Friendly Tips for Neurodivergent Loved Ones and Comfortable Social Spaces for Neurodivergent Individuals During the Holidays.
  • Social interactions can be particularly challenging during the holiday season due to frequent and overwhelming gatherings.
  • Neurodivergent individuals who enjoy socializing may prefer calm, predictable settings.
  • Structured social activities provide a comfortable way for neurodivergent individuals to engage with others, as they offer clear rules and a shared experience.
  • Family gatherings can be stressful due to interactions with relatives they don’t see often, leading to feelings of overwhelm.
  • It’s crucial to respect the boundaries of neurodivergent individuals, allowing them to make their own choices about social interactions and providing opportunities for breaks to avoid overstimulation.
  • Understanding and respecting their social preferences and boundaries, especially during the holiday season, helps ensure neurodivergent individuals feel safe, respected, and included.

Full Article

Navigating social interactions can be particularly challenging for neurodivergent individuals, especially during the holiday season when gatherings are frequent and often overwhelming. While some neurodivergent people enjoy socializing, they may prefer calm and predictable environments where they can engage in structured activities. Understanding their unique needs and preferences is crucial for creating a supportive and inclusive atmosphere that allows them to participate comfortably and meaningfully.

Comfort in calm familiarity

Neurodivergent people who enjoy socializing may prefer calm, predictable gatherings. They might like sitting with a friend to play video games, quietly working on a puzzle together, or playing board games. When faced with a loud, busy family gathering, neurodivergent individuals may withdraw or seek out one person they enjoy chatting with—someone who genuinely respects and understands their accommodation needs, and with whom they can happily spend time discussing a single subject. This person feels safe to them. However, it’s important to recognize that their safe person might need a break too, so having multiple people that they feel safe with can be beneficial.

Incorporating structured activities

For neurodivergent individuals, having structured social activities like board games or group video games can provide a comfortable way to engage with others. Social rules and nuances can often be confusing, making unstructured mingling feel overwhelming and unmanageable. Structured activities offer a more supportive environment for social interaction with the rules clearly identified and a shared experience to drive conversation. Baking together, wrapping presents, and completing holiday crafts are all shared experiences that have clear instructions and goals. These activities not only make socializing more manageable but also add a festive and inclusive touch to holiday gatherings.

Overstimulation with unfamiliar relatives

Even family gatherings can feel strange and stressful. Talking to relatives they don’t see often can be tough for your loved one as they work out how to talk and act around people that feel unfamiliar, even if they are family. This can be overwhelming since they have to understand and respond to different social cues and expectations that might not be easy or comfortable for them.

To help ease this stress, consider preparing your loved one in advance by discussing who will be at the gathering and what to expect. Shared interests can be a great way to connect with others and make conversations more engaging. Tell or remind the neurodivergent individual of interests they have in common with relatives they don’t see as often to help start conversations. Socializing can be challenging, so it’s important to be patient and provide support without pressure.

Supporting boundaries and choice

Even with careful planning and maintaining traditions, the holiday season can still be overwhelming. Back-to-back events can be exhausting for anyone, but they can quickly become overstimulating for neurodivergent individuals. Seeing new people or people they only see once a year, having to navigate complex social hierarchies, and often trying to hide their neurodivergent traits to fit in can be very draining. While it is important to encourage your neurodivergent loved one to engage, it’s also critical to respect their boundaries and teach them how to have agency. Agency refers to their ability to make their own choices and decisions about social interactions, ensuring they feel empowered and in control. Allowing them to sit out some holiday parties for the sake of their own wellbeing can be a gift of emotional recharge, ensuring they don’t come out of the season completely exhausted.

Conclusion

Recognizing and respecting the social preferences and boundaries of neurodivergent individuals is essential, especially during the busy holiday season. Providing structured activities and allowing for breaks can help them manage the stress and overstimulation that often accompany large gatherings. By fostering an environment of understanding and support, we can ensure that neurodivergent individuals feel safe, respected, and included, ultimately enhancing their social experiences and overall well-being.

Learn More about Creating Joyful and Inclusive Holidays

This is part of a four-part series on the topic of creating joyful and inclusive holidays for neurodivergent family members, which began with Supporting a Neurodivergent Family Member During the Holidays. Meeting Neurodivergent Needs While Traveling provides tips and strategies to support neurodivergent individuals during travel to minimize stress. Learn Sensory-Friendly Tips for Neurodivergent Loved Ones to ensure they can enjoy the festivities and participate in making memories. Finally, creating Comfortable Social Spaces for Neurodivergent Individuals During the Holidays provides strategies for managing stress and overstimulation in social situations.

Additional information:

Autism Spectrum Disorder: Information and Resources for Families

Posted on by Nicol Walsh

A Brief Overview

  • Autism Spectrum Disorder (ASD) is a spectrum condition with varied signs and symptoms. It involves challenges in multiple areas, including social skills, emotional regulation, communication, and behavior.
  • ASD can appear differently from one person to the next, and as a child develops from infancy through adulthood. Families concerned about a child’s development can call the state’s Family Health Hotline at 1-800-322-2588. This toll-free number offers help in English, Spanish and other languages.
  • Parents of infants and toddlers aged 0-3 with developmental concerns may benefit from the services provided by the Early Support for Infants and Toddlers (ESIT) program, which provides specialized services and support that are crucial during the early and highly formative years of a child’s life.
  • Students with ASD may qualify for school-based services through an Individualized Education Program (IEP) if their disability significantly impacts educational access. These services are determined through evaluations that can include various related conditions. A medical diagnosis is not required for school-based evaluations or interventions.
  • The Developmental Disabilities Administration (DDA) accepts diagnoses from Autism Centers of Excellence (COEs) as a component of DDA services eligibility, with the exception of naturopathic providers.
  • Connecting with other families to share and learn from experiences is invaluable, and there is a wealth of resources available to assist those seeking support and information in Washington State. Parent to Parent (P2P) programs across various counties provide free training and support, with support groups tailored to cultural and linguistic communities such as Spanish-speaking and Black & African American families.
  • PAVE provides support to families navigating various healthcare systems related to disability. Fill out a Helpline Request for direct support and click on the “Health and Wellness” link to be directed with individual support.

Full Article

Parents of individuals with autism have many different experiences when watching their child’s development, navigating school years and relationships, and building community and belonging. When developmental milestones aren’t met in typical timeframes, families may seek a diagnosis, medical interventions, and/or support from school.

CDC numbers show that 1 in 36 children have ASD and 2.8% of 8-year-old children have a diagnosis of ASD. According to Washington’s Department of Health (DOH), between 23,000-48,000 of the state’s children have some form of diagnosed ASD.

April is Autism Acceptance Month, providing an opportunity to consider challenges and celebrations for individuals who experience neurodiversity, which is a word used to capture a range of differences in the ways that humans function and experience the world. Much of the Autistic community rallies to honor neurodiversity, uplift the voices of self-advocates, and forward the movement of civil and social rights.

To promote dignity, neurodiversity, and empowerment, many autistic self-advocates prefer identity-first language, such as “autistic person” instead of person-first language like “person with autism”. This approach recognizes autism as an integral and inseparable part of an individual’s identity.

What is Autism Spectrum Disorder (ASD)?

Autism Spectrum Disorder (ASD) is referred to as a “spectrum”, which means that signs and symptoms vary among individuals. The Centers for Disease Control and Prevention (CDC) defines Autism Spectrum Disorder (ASD) as “a developmental disability that can cause significant social, communication and behavioral challenges.

“There is often nothing about how people with ASD look that sets them apart from other people, but people with ASD may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less.”

A diagnosis of ASD includes several conditions that were formerly diagnosed separately, including autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), and Asperger syndrome. A short YouTube video by Osmosis.org provides an overview of ASD.

Autism Indicators and Markers Across the Lifespan

People with ASD may struggle with social, emotional, and communication skills. They might repeat certain behaviors or have rigid ideas about routines.  Indicators of ASD often begin during early childhood and typically last throughout life. Professor and autism self-advocate, Dr. Stephen Shore said, “If you’ve met one person with autism, you’ve met one person with autism.” ASD can appear differently from one person to the next, and as a child develops from infancy through adulthood.  There are services and supports available at each stage of development and life.

Early Childhood Indicators and Supports

The American Academy of Pediatrics recommends that all children have a developmental screening at every well-child check-up, with an autism screening at 18 months of age and again between ages 2 and 3. To encourage early screening and intervention, the CDC provides developmental milestone trackers for children Birth-5, including a Milestone Tracker App. State-specific information about early screening recommendations and guidance is available from the Washington Department of Health (DOH).  Families concerned about a child’s development can call the state’s Family Health Hotline at 1-800-322-2588. This toll-free number offers help in English, Spanish and other languages.

Some early childhood indicators of ASD include:

  • Not pointing at objects, such as an airplane flying overhead, or looking when someone else points
  • Not wanting to be held or cuddled
  • Repeating or echoing words, phrases, or actions

Several state agencies collaborated to publish Early Learning and Development Guidelines. The booklet includes information about what children can do and learn at different stages of development, focused on birth through third grade. A free downloadable version is available in English, Somali, and Spanish on the Washington State Department of Children, Youth & Families (DCYF) website. An English translation is also available on the Office of the Superintendent of Public Instruction (OSPI) Early Learning Resources page.

Parents of infants and toddlers aged 0-3 with developmental concerns may benefit from the services provided by the Early Support for Infants and Toddlers (ESIT) program, which provides specialized services and support that are crucial during the early and highly formative years of a child’s life. Early intervention services through ESIT not only supports the child’s immediate developmental needs but also lays a foundation for their future learning and adaptation. ESIT provides the following:

Early Evaluation and Identification: ESIT helps in the early identification of developmental delays or disabilities, including autism, through assessments conducted by a team of professionals. These evaluations focus on key developmental areas such as motor skills, cognition, communication, social interaction, and self-help skills. Early diagnosis is crucial for autism, as it can lead to early intervention, which is shown to improve outcomes.

Services and Supports: Once a child is evaluated and deemed eligible, they receive an Individualized Family Service Plan (IFSP) under Part C of the Individuals with Disabilities Education Act (IDEA). This plan is tailored to meet the unique developmental needs of the child and also considers the family’s resources, priorities, and concerns. The IFSP includes detailed information on the child’s current development levels, the specific interventions planned, and the expected outcomes. Through ESIT, children can access a wide range of early intervention services designed to address specific developmental needs associated with ASD.

Family-Centered Approach: The family plays a crucial role in the development and implementation of the IFSP. Family Resource Coordinators (FRCs) assist families in understanding their child’s needs, the available services, and the implementation of the intervention plan. This inclusive approach ensures that the family’s needs and goals are addressed, promoting a supportive environment for the child.

The ESIT website includes videos to guide family caregivers and a collection of Parent Rights and Leadership resources, with multiple language options.

Parents may also contact their local school district for evaluation.  Regardless of whether a student is medically diagnosed with ASD, a school district has the affirmative duty to seek out, evaluate and serve—if eligible—any child within its boundaries who has a known or suspected disability condition that may significantly impact access to learning (Child Find Mandate). Child Find applies to IDEA’s Part B IEP services for children ages 3-21 and to IDEA’s Part C early intervention services for children Birth-3.  See PAVE’s article about early intervention services for more information.

Supporting a Student with ASD

Children and youth in adolescence may demonstrate the following characteristics of ASD:

  • Avoiding eye contact or making excessive eye contact
  • Uncertainty in understanding what facial expressions or tones of voice mean
  • Not understanding sarcasm, figures of speech, or metaphors

Autism is an eligibility category for a student to receive school-based services through an Individualized Education Program (IEP). The categories are defined by the federal Individuals with Disabilities Education Act (IDEA). State law further defines the categories and criteria for intervention.  

The Washington Administrative Code that describes IEP eligibility (WAC 392-172A-01035) describes autism as “a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age three, that adversely affects a student’s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences.”

Schools have specific evaluation tools to determine how the features of an autistic disorder might impact school. Evaluations can also determine eligibility based on health impairments (for example, ADHD), speech delays, learning disabilities, or emotional behavioral conditions that might co-occur with autism. See PAVE’s article about evaluation process for more information, including a list of all IDEA eligibility categories.

In short, a student is eligible for an Individualized Education Program (IEP) if the evaluation determines:

  • The student has a disability
  • The disability significantly impacts access to education
  • The student requires Specially Designed Instruction (SDI) and/or Related Services

Not every student with ASD is eligible for school-based services through an IEP. Some may have “major life activity” impacts to qualify for a Section 504 Plan, which can accommodate a student within general education. Section 504 provides anti-discrimination protections as part of the Rehabilitation Act of 1973. Keep in mind that students with IEPs have disability-related protections from IDEA and Section 504. Additional protections are part of the Americans with Disabilities Act (ADA). See PAVE’s article about disability history for additional information.

A diagnosis is not required to provide special education or related services. If the school district requires a comprehensive medical evaluation, they may request permission from the parent to have the child evaluated at the district’s expense (WAC 392-172A-03020).

Where to Begin to Obtain Supports

Families whose children experience autism may need services beyond school. Speech, Occupational Therapy, Applied Behavioral Analysis (ABA) therapies, and other services may be available through insurance if they are determined to be medically necessary. The state Health Care Authority provides information about ABA resources and how to seek approval from public insurance (Apple Health) for specific therapies. HCA also hosts a list of Contracted ABA providers in Washington State.

Diagnosing ASD can be difficult since it can appear differently from one person to another, and indicators change depending on the chronological and developmental age of the individual. Doctors look at the person’s behavior and development to make a diagnosis.  The diagnostic process usually takes a while, lasting years in some cases. In addition to working through insurance and health systems, you may encounter barriers when identifying providers who can diagnose within the age range of the individual.

Medical diagnoses in Washington are provided by Autism Centers of Excellence (COEs). An Autism COE may be a health care provider, medical practice, psychology practice, or multidisciplinary assessment team that has completed a certification training authorized by the state’s Health Care Authority (HCA). Physicians, nurse practitioners, and pediatric primary care naturopaths are eligible to apply for COE training and endorsement. The Developmental Disabilities Administration (DDA) accepts diagnoses from COEs as a component of DDA services eligibility, with the exception of naturopathic providers.

Locate screening and diagnostic services in your location at ParentHelp123. If insurance doesn’t cover the full cost of diagnosis, check with the diagnostician to identify sliding scale or other payment options.

PAVE provides support to families navigating various healthcare systems related to disability. Fill out a Helpline Request for direct support and click on the “Health and Wellness” link to be directed with individual support. 

 Building Community Connections

Connecting with other families to share and learn from experiences is invaluable, and there is a wealth of resources available to assist those seeking support and information in Washington State. These resources include various programs and organizations tailored to meet specific needs, with some services focusing on race, cultural identity, and language. By tapping into these resources, families and individuals can find not only support but also a sense of belonging within a community that understands their unique challenges and perspectives.

Parent to Parent (P2P) of Pierce County, a program of PAVE, partners with Pierce County Human Services and The Arc of Washington State to provide No Cost training and support. PAVE’s Pierce “Parent 2 Parent Support Groups” offers a nurturing space for caregivers to connect, share experiences, and find guidance. Support groups specific to a cultural and linguistic community (Spanish-speaking, and Black & African American families) will be supported by a PAVE facilitator that is a cultural/linguistic match for the families served.

Parent to Parent (P2P) programs across various counties provide free training and support, with support groups tailored to cultural and linguistic communities such as Spanish-speaking and Black & African American families. P2P of Yakima, Walla Walla, Chelan/Douglas, Benton/Franklin, Skagit, Snohomish, Whatcom, Grays Harbor/Pacific, Clark, Klickitat, Lewis, Skamania, and Grant counties provide Spanish-speaking support, events, and resources. P2P King County supports Spanish-speaking and African American families.

Informing Families provides navigational supports for all ages, including referral to culturally responsive programs and services, such as Vietnamese Family Autism Advisory Board (VFAAB), Odessa Brown Children’s Clinic (OBCC), and Families of Color Seattle (FOCS).

The South Sound Autism Partnership is a collaborative network dedicated to raising awareness, acceptance, and advocacy for autism. SSAP aims to support and enact positive change within the community through monthly online meetings. Recordings of guest speakers at previous meetings and meeting notes are available on the SSAP website.

Additional Resources

The downloadable Autism Guidebook for Washington State, published by a dedicated Autism Task Force in collaboration with the DOH and other agencies, offers a comprehensive resource for families, educators, medical professionals, and care providers. It features a detailed Autism Lifespan Resource Directory, diagnostic and special education eligibility criteria, and recommended intervention.

Another guidebook, the Pierce County Parent Coalition (PC2) Resource Guide, contains clickable and searchable links to services throughout the state.

The University of Washington Autism Center provides a manageable place to begin with a small collection of resource categories that include online tools, early recognition, organization, and neurodiversity. Within its online tools, UW maintains lists of organizations that provide advocacy, assessments, intervention services, and research/training.

Washington Autism Alliance (WAA) provides free support for families navigating insurance and medical systems and can help with DDA applications. WAA’s website requests families to join the agency by providing basic information before they navigate to request an intake. Note that while basic services are free from WAA, the agency may charge a fee based on a sliding scale if families request legal services from an attorney.

The Autistic Self Advocacy Network (ASAN) shares resources by autistic individuals with lived experience for people who have autism spectrum disorders, including a welcome kit for newly diagnosed individuals: Welcome to the Autistic Community!

The DOH website links to family supports and services for individuals of all ages, including links to Regional Genetic Clinics.

Myth and Misunderstanding in Special Education

Posted on by Nicol Walsh

A Brief Overview

  • Everyone has moments when they hear something and pause to wonder, Is that true? This article and its companion videos describe some special education topics that may be misunderstood. Included is an explanation of what is fact.
  • Topics relate to special education eligibility, placement, support personnel, bullying, student discipline, and more.
  • Read on to see if there are things you haven’t quite understood about your student’s rights or educational services. PAVE hopes to empower families with information to make sure students with disabilities have their best chance for an appropriate and meaningful education.
  • The final myth described in this article is that PAVE provides advocacy on behalf of families—we don’t! But we can help you learn to be your child’s most important advocate. Click Get Help at wapave.org to request 1:1 assistance.

Full Article

Everyone has moments when they hear something and pause to wonder, Is that true?

Parents/caregivers in meetings with their child’s school can feel particularly confused when something doesn’t sound right. They might wonder whether it’s appropriate to question school authorities. They might not understand all the words being spoken. Fear of not knowing something can make it uncomfortable to speak up.

At PAVE, we encourage families to ask questions and make sure they understand the words school staff use. Ask for important answers in writing, and plan to research explanations that are confusing.

For example, if you ask for something and the school says no because of a law or policy, ask for a written copy of the relevant parts of that law or policy. Try to understand the school’s reason for saying no. Write down what you understand and send a reflective email to school staff to make sure you understand their position correctly.

Having everything in writing is important, especially if filing a complaint is a possible next step.

This article describes myths and misunderstandings some people might experience when navigating school-based services for students with disabilities. These topics apply to students with Individualized Education Programs (IEPs), students with Section 504 Plans, and students with possible disability conditions impacting their educational access.

Parent Participation

MYTH: The school must hold a meeting without a parent if the parent is unavailable before an annual renewal deadline because the student’s IEP, 504 Plan, or eligibility will expire or lapse.
FACT: Parent participation is a higher priority than deadlines. Schools are required to accommodate parents/caregivers to ensure their attendance and participation at meetings where their child’s special education services are discussed. Those rights are affirmed in a court decision from 2013: Doug C. Versus Hawaii. If a meeting is delayed because a family member is temporarily unavailable because of illness, work, travel, or something else, services continue uninterrupted until the meeting. PAVE provies an article: Parent Participation in Special Education Process is a Priority Under Federal Law.

Evaluation

MYTH: The school is not required to evaluate a student who gets passing grades.
FACT: If there is a known or suspected disability condition that may be significantly impacting a student’s access to any part of their education—academic, social-emotional, behavioral, or something else—then the school district is responsible under Child Find to evaluate the student to determine eligibility for services and support. Child Find is an aspect of federal law, the Individuals with Disabilities Education Act (IDEA).

MYTH: Section 504 doesn’t apply for a student without a plan or program.
FACT: Section 504, which is part of the federal Rehabilitation Act of 1973, includes protections for students with suspected or known disability conditions that warrant evaluation. For example, if a student consistently misses school for reasons that may be connected to disability, the school may be accountable under the civil rights protections of Section 504 if an evaluation referral isn’t initiated.

MYTH: Section 504 eligibility does not involve an evaluation.
FACT: An evaluation process is required to determine whether a student has a disability condition impacting a major life activity. That evaluation process may include a review of grades, test scores, attendance, health room visits, parent and student input, teacher observations, medical or psychological evaluations, special education data, medical information, and more. If the student meets criteria, evaluation documents are used to support the design of accommodations and other individualized supports to ensure equity. The state provides a family-friendly handout, downloadable in multiple languages, to describe 504 eligibility, evaluation process, plan development, and civil rights complaint options.

Medical Diagnosis

MYTH: A student cannot be identified as eligible for services under the autism category unless they have a medical diagnosis of autism.
FACT: If there is a suspected disability condition and reason to believe there is a significant educational impact, the school is responsible under Child Find to evaluate the student to determine eligibility for services. Schools have evaluation tools to determine characteristics of autism, its possible educational impacts, and student needs. Medical information might help an IEP team design interventions, but families are not required to share medical information with the school, a medical diagnosis is not required, and doctors may not “prescribe” an IEP.

Placement

MYTH: Special Education is a location within the school.
FACT: Special Education is a Service, Not a Place, and PAVE provides an article by that title to further explain a student’s right to educational services in general education—the Least Restrictive Environment (LRE)—to the maximum extent appropriate.

MYTH: The school district is in charge of placement decisions.
FACT: The IEP team determines a student’s placement. If placement in general education, with support, is not meeting the student’s needs, the IEP team is responsible to locate or design a placement that best supports the student in accessing their Free Appropriate Public Education (FAPE). Placement might be general education, a segregated classroom setting where special education services are provided, day treatment, alternative learning environment, residential, home-based, something else, or a combination of any of these options. Once an IEP team designs a placement, the school district has some leverage in choosing a location. For example, if an elementary-age student who is struggling to read needs individualized services from a reading specialist, the district might bus them to a school in another neighborhood where a specially trained teacher provides reading instruction in a smaller classroom. The district doesn’t have to offer every placement or service within every building, but it does need to serve the IEP as written by the IEP team.

MYTH: Preschool IEPs are not required to serve students in the Least Restrictive Environment to the maximum extent appropriate.
FACT: An IEP is required to serve a student with a Free Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE), to the maximum extent appropriate, regardless of age or grade level. WAC 392-172A-02050 provides specific language about state requirements for LRE, including for preschool students.

Adult Aids at School

MYTH: A 1:1 creates a “restrictive environment” for a special education student.
FACT: Least Restrictive Environment (LRE) refers to placement. A helper is an aid, not a placement. Supplementary aids and services, including 1:1 support from an adult staff member, may support access to the Least Restrictive Environment (LRE) for some students. If having a 1:1 enables a student to appropriately access learning in the general education setting, then that support is provided to ensure FAPE (Free Appropriate Public Education). FAPE within LRE is required by federal special education law, the Individuals with Disabilities Education Act (IDEA).

MYTH: Support personnel should regularly rotate in their roles to ensure a student does not become “dependent” on specific individuals or relationships.
FACT: Healthy interpersonal relationships enable humans of any age to feel safe and secure. Because of the way our brains work, a person doesn’t learn well when a fight/flight nervous system response is activated. Connecting to trusted adults and receiving consistent help from safe, supportive people enhances learning. PAVE provides a collection of articles about Social Emotional Learning (SEL) and Washington State’s SEL Standards.

Section 504

MYTH: A 504 Plan is a watered down IEP.
FACT: Section 504 is part of a civil rights law called the Rehabilitation Act, passed by the US Congress in 1973. The anti-discrimination protections of Section 504 apply to any person identified as having a disability condition that impacts their life in a significant way. Public agencies, including schools, are responsible to provide individualized accommodations and support to enable the person with a disability to access the service, program, or building in a way that affords them an equitable chance to benefit from the opportunity. A 504 Plan at school ensures the right to a Free Appropriate Public Education (FAPE). Section 504 FAPE rights are upheld by the US Department of Education’s Office for Civil Rights. PAVE provides a video series: Student Rights, IEP, Section 504 and More.

MYTH: Section 504 doesn’t apply to a student with an IEP
FACT: Section 504 protections apply to students with IEPs and those with Section 504 Plans. The civil rights protections of Section 504 are threaded throughout the IEP, especially within sections that describe accommodations and modifications. Section 504 includes specific provisions to ensure students are not discriminated against within student discipline, by unmitigated bullying, or through denial of support that is needed for access to what non-disabled students access without support. All aspects of school are protected, including athletic events, field trips, enrichment activities, specialized learning academies, and more—everything the school is offering to all students. PAVE provides a comprehensive article about Section 504 and its protections for all students with disabilities.

MYTH: If the student has found ways to cope with their disability, they don’t need support.
FACT: Section 504 forbids schools from using “mitigating measures” to justify denial of evaluation or support. A mitigating measure is a coping mechanism—for example, a deaf student who reads lips or a student with an attention deficit whose symptoms are improved by medication. PAVE’s article about Section 504 provides more detail about mitigating measures.

Bullying

MYTH: The best way to help a student with a disability who is being bullied is to remove them from the bully’s classroom.
FACT: Section 504 protects a student with disabilities in their right to be protected from bullying. That means the school must stop the bullying and support the victim to feel safe again. Schools may not punish or disadvantage the victim. OCR says: “Any remedy should not burden the student who has been bullied.” PAVE provides a video: Bullying at School: Key Points for Families and Students with Disabilities.

MYTH: An informal conversation is the best way to address bullying.
FACT: The best way to hold a school accountable to stop bullying and support the victim is to file a formal HIB Complaint. HIB stands for Harassment, Intimidation, and Bullying. Washington State’s 2019 Legislature passed a law that requires school districts to write formal HIB policies and appoint a HIB Compliance Officer to spread awareness and uphold the laws. Families can contact their district’s HIB Compliance Officer for support with a complaint and to ensure student civil rights are upheld.

IEP Goals and Process

MYTH: An IEP provides education to a student with a disability.
FACT: An IEP is not the student’s education. An IEP provides educational services to enable a student to access their education. IEP goals target areas of learning that need support in order for the student to move toward grade-level curriculum and learning standards. Included are services for academics, adaptive skills, social-emotional skills, behavior—all areas of learning that are impacted by disability.

MYTH: If an IEP team agrees to change something about a student’s services or placement, the team must submit that idea to the district for approval or denial.
FACT: An IEP team has decision-making authority. The team is required to include a person knowledgeable about district resources (WAC 392-172A-03095) so decisions about program and placement can be made at the meeting. If a required IEP team member is not in attendance, the family participant must sign consent for the absence. The family can request a new meeting because a key team member, such as a district representative, is missing. PAVE provides more information and a Sample Letter to Request an IEP meeting.

Behavior and Discipline

MYTH: A Functional Behavioral Assessment (FBA) is used to figure out how to discipline a student more effectively.
FACT: An FBA is an evaluation focused on behavior. It helps IEP teams understand the needs behind the student’s behavior. A Behavior Intervention Plan (BIP) is built from the FBA to provide positive behavioral supports, teach new or missing skills, and reduce the need for discipline. PAVE provides a video about the FBA/BIP process.

MYTH: A school isn’t responsible to track exclusionary discipline if a parent agrees to take the child home and no paperwork is filed when the school calls to report a behavior incident.
FACT: “Off books” or informal suspensions count as exclusionary discipline for students with disabilities. If a student with a disability misses more than 10 cumulative days of school because of their behavior, the school is responsible to hold a manifestation determination meeting to decide whether the behaviors are directly connected to the disability and whether school staff are following the IEP and/or behavior plan. If services or placement need to change, this formal meeting is a key opportunity to make those changes. PAVE provides a video: Discipline and Disability Rights: What to do if Your Child is Being Sent Home.

Privacy

MYTH: A parent or provider who visits school to support or evaluate an individual student is violating the privacy rights of other students just by being there.
FACT: Federal laws protect private medical or educational records. Visiting a classroom or other school space should not expose student records for inappropriate viewing. The Department of Education provides a website page called Protecting Student Privacy to share resources and technical assistance on topics related to the Family Educational Rights and Privacy Act (FERPA). The confidentiality of medical records is protected by the Health Insurance Portability and Accountability Act (HIPAA). Understanding HIPAA and FERPA can help parents /caregivers ask their school for documented explanations whenever these laws are cited as reasons for a request being denied.

Literacy

MYTH: Schools cannot provide individualized instruction in reading through a student’s IEP unless the student is diagnosed by a medical provider as having dyslexia.
FACT: No medical diagnosis is needed for a school to evaluate a student for any suspected disability that may impact access to learning and school. An educational evaluation might show that a student has a Specific Learning Disability in reading, with characteristics of dyslexia. When a disability that impacts education is identified through evaluation, the school is responsible to provide services to meet the identified needs and enable appropriate progress. PAVE provides an article: Dyslexia Screening and Interventions: State Requirements and Resources and a video: Supporting Literacy for Students with Learning Disabilities.

Graduation

MYTH: The school has to withhold credits for a student to receive services beyond a traditional senior year.
FACT: Credits do not need to be withheld, and a student doesn’t automatically earn a diploma by reaching the required number of credits. The IEP team determines the target graduation date for a student receiving services through an IEP and how transition programming for a student ages 18-21 might support learning and life planning. Receiving the required number of credits is only part of what a student needs to earn a diploma, and the IEP team individualizes a plan for the student with a disability to earn their diploma within the state’s options for graduation pathways. PAVE provides a Toolkit for life after high school planning.

Private School and Home School

MYTH: Public schools do not have to do anything for students with disabilities who are home schooled or enrolled in private schools by parent choice.
FACT: Child Find applies to all students with known or suspected disabilities who live within a district’s boundaries, including those who are home schooled or enrolled in private schools. Child Find means the public district is responsible to seek out and evaluate all students with known or suspected disabilities. If the student is found eligible for services, parents/caregivers can choose to enroll the student in the public school to receive special education services, even if the primary educational setting is a private or home placement. If the student is fully educated in the private setting, by parent choice, the private school provides equitable services.

Parent Support from PAVE

MYTH: PAVE gives the best advice and advocates on behalf of families.
FACT: PAVE does not give legal advice or provide advocacy. We support families in their work.  Staff from our Parent Training and Information (PTI) program provide information and resources to empower family advocates. Our goal is to ensure that family advocates have knowledge, understand options, and possess tools they need to work with schools to ensure that student rights are upheld and the needs of students with disabilities are met. Click Get Help at wapave.org to request 1:1 assistance. Help us help you by reading your student’s educational documents and having those documents handy when you connect with us!

Depression and the Autism Spectrum

Posted on by Nicol Walsh

It is a common misconception that people who have Asperger’s or Autism do not get depression.

In fact this is more common than you think!

Suicidal thoughts are ten times more likely in people with Asperger’s or in the Autism Spectrum.  Survey data was used on 256 men and 118 women who were diagnosed:

66% reported suicidal thoughts

35% reported plans or attempts at suicide

31% reported depression

Depression can be caused by:

Social troubles because you do not seem to fit in

Guilt or regret over past actions/outbursts/meltdowns

Overwhelming feelings and thoughts

Anxiety and Panic Attacks

Miscommunications / Misunderstandings

Fatigue or Tiredness due either to the condition or to medications taken for the condition (e.g.: Ritalin)

Here are some comments people with Asperger’s have made:
(Comments have been made anonymously)

“I have been diagnosed with Asperger’s syndrome and depression.
My repeated obsessive thoughts turn into that sadness and also when someone gets frustrated with me like my parents. I don’t even know how I feel sometimes. When I can’t learn from my mistakes as fast as everyone else. I feel hopeless because it’s how I’m made to make mistakes over and over without ending.”

“I understand. Repeating the same mistake over and over…I would always forget to leave my coat in my locker at school (because of some rule) and 4 days out of 5 I would forget it. Consistently. And my repetitive obsessive thoughts also turn into sadness, but for me this occurs irrespectively of being yelled at.”

“I have Asperger’s and am high functioning to a degree. I also suffer from depression and anxiety which a lot stems to the fact my circle of friends has drastically dropped since my teenage years, I’m nearly 23 and I don’t go out like most people my age do. Mainly because I socially isolate myself. I find situations arise when I go out, for example…a club I used to go to has very loud bands on Friday nights, I can’t hear my thoughts it screws with my head. It depresses me because when I was younger I had loads of friends, now I’m a social outcast who feels nothing but bitterness and anger towards a lot of society. Al lot of my friends don’t want nothing to do with me anymore. Best friends have come and gone and now I feel alone. I live alone which doesn’t help and rely on Xbox live to chat to people. I just wish sometimes I wouldn’t come out with weird stuff. It freaks me out as well as it does to other people.”

The first step to helping, is by recognizing the signs:

A suicide attempt is rarely made all of a sudden.  It is most common for individuals to shift between the stages on a continuum which range from thinking about suicide to committing suicide.

The stages can go back and forth and are not limited to:

Planning – for example, giving away possessions that were thought of as special to them.

Organizing means – a fascination with a certain weapon that they were not interested in before, for example.

Suicide attempt

Some may start in self harming behavior which can lead to death while the goal is not to actually die.  This is because these individuals may not have actually thought of the consequences and finality of suicide.

Pay attention to:

Statements like “I would be better if I just died”

Threatening to commit suicide

If they are more withdrawn or depressed: not participating in their routine activities, they avoid communicating even more than usual.

Recognizing the signs is even harder when some people with Autism or Asperger’s cannot communicate the conventional way.

Here is how you can help someone who is depressed

People who consider suicide mostly need to know that others do care:

Even if you don’t talk, just being there helps

Let them know that most people think about suicide at one time or another, and thinking about suicide does not mean that things can’t get better.

Listen to what they are saying about themselves and their life

Avoid saying things like “you should be grateful to be alive!” or “You will be fine”

Tell them that you will always be willing to talk and there are others who care

Inspire them to make new friends or contact old friends or even call the Suicide Prevention Lifeline. https://www.suicidepreventionlifeline.org/– 1-800-273-8255.  The Lifeline offers online chat, which is a good option when individuals are non-verbal or when social anxiety is high.

If you see that there is an imminent danger of the individual to commit suicide:

If it is an emergency, call 911

Contact outside help or make sure they contact their Doctor

Monitor their temperament and establish a follow up plan when there are changes – the plan can include calling the Doctor, making sure they call the National Suicide Prevention Lifeline – https://www.suicidepreventionlifeline.org/ or call 1-800-273-8255.

Make sure to remove any means that can facilitate suicide – prescription drugs, weapons, etc.

Most of all let them know that there are always people who are ready to help them.  It is important for them to know that it’s ok to ask for help and let either family members, friends or professionals how they feel.

References:

Synapse, Reconnecting Lives, Fact Sheets:  Depression, Suicide Risk and Autism
Retrieved from – http://www.autism-help.org/family-suicide-depression-autism.htm
Collingwood, J. Suicidal Thoughts 10 Times More Likely in Adults with Asperger’s.
Retrieved from http://psychcentral.com/news/2014/10/13/suicidal-thoughts-10-times-more-likely-in-
adults-with-aspergers/76016.html
Cassidy, S. et al. Suicidal ideation and suicide plans or attempts in adults with Asperger’s syndrome
Attending a specialist diagnostic clinic: a clinical cohort study. The Lancet Psychiatry, 25 June 2014 doi:
10.1016/S2215-0366(14)70248-2
Raja, M. Suicide risk in adults with Asperger’s syndrome. The Lancet Psychiatry, 25 June 2014
Doi:10.1016/S2215-0366(14)70257-3

 

Positive Behavior Supports: Continuing the model at home and in the community

Posted on by Nicol Walsh

By: Dr. Vanessa Tucker, PhD., BCBA-D

What is Positive Behavior Support?

Positive Behavior Support (PBS) is a special education initiative that informs school districts, schools and classrooms regarding prevention and intervention practices designed to teach and reinforce pro-social behaviors. Behavior supports, as we parents well know, do not end at the schoolhouse door. Interfering behaviors can and do continue to manifest themselves in other settings and present a real and present challenge to parents and caregivers raising children with special needs.

The field of PBS is built on the premise of universal interventions that are designed to teach behaviors that prevent negative or challenging ones from occurring. These universal interventions, or Tier I, are effective for most children, but approximately 15 to 20% will need something much more intense in order to experience success. These children require what are known as Tier II and Tier III Interventions. Tier II interventions are designed to address the 15% who need more focused interventions. These may be temporary or may be needed on an ongoing basis. A small number of children (approximately 5%) will require intensive interventions, or Tier III, designed to support the most challenging behaviors. As a parent, you may find that problematic behaviors are a top priority for you due to your child’s unique needs. Parents can benefit from applying the same basic system of PBS in the home and community in order to mitigate the presence of interfering behaviors as well as teaching and reinforcing acceptable replacements. The focus of this brief article will be on prevention tactics that parents and caregivers can implement in the home and community.

Prevention as Intervention

Challenging or interfering behaviors occur for a wide variety of reasons. In many cases a communication breakdown is the “culprit.” In other words, children who have communication delays often resort to behaviors we don’t want in order to let us know what they do want! Children may also engage in challenging behavior due to stress, fatigue, unmet needs for attention, or because they have learned a habit that “works” for them. For example, the child may engage in mild to moderate aggression toward a parent when they first arrive at home as a means of accessing attention. This is problematic as the child inevitably is reinforced for these behaviors when the parent provides the designed attention. The first order of business in PBS is to teach and reinforce behaviors and/or to change our own practices as a means of prevention. In addition, it is strongly recommended that you work with your school team and utilize the Functional Behavior Assessment (FBA) and Positive Behavior Intervention Plan (PBIP) to guide your interventions at home. Pay close attention to the described “function” or reason(s) why your child engages in challenging behaviors. You’ll want to plan your interventions based upon those hypothesized functions. For example, if your child’s aggression is due to escape from unwanted tasks, you’ll want to find ways to help him escape (e.g. ask for a break) successfully. Remember that whatever you select as an intervention should be acceptable to you and your family.

In order to be efficient, you will want to analyze the various times, areas and places where challenging behaviors are most likely to occur. Create a simple matrix of your activities and rate your child’s behaviors as (a) non-problematic, (b) somewhat problematic, or (c) very problematic. Target those areas that are “very problematic” first. Decide what could be creating or maintaining the problematic behavior. Is your child in need of communication supports? Does he understand what is expected of him? Does she need more visuals in order to do what you want? Is her need for attention being met in ways that are unacceptable? Are there sibling issues? Tackling the most difficult areas first will bolster your ability to dive into the smaller issues later and may actually address them inadvertently through your interventions with the bigger ones.

The following table (Table 1.0) presents a list of general recommendations and justifications for prevention of challenging behaviors at home or in the community.

Table 1.0 Tactics for Prevention of Challenging Behaviors

Tactic Rationale Example
Non-Contingent Reinforcement/Planned Attention Your child may need your attention and will engage in whatever behavior necessary to obtain it. You want your child to obtain your attention without having to engage in mild to moderate behaviors to receive it. When you come home spend the first 10 or so minutes with your child before you check email, answer the phone or do anything else. Plan this and stick with it. Give your child (or children) your undivided attention before you do anything else.
Schedules-Visuals and/or Written Your child may need the same structural supports that they use in the school setting in order to predict what is coming, what is done, and what is expected of them. They may not be able to predict these things as successfully if given with verbal prompts only. Create and use schedules with visuals or words for family routines. This might include an activity schedule for evening activities, for a bathing routine or a trip to the store. Rely on your school staff for support in this area. They can assist you to build and use these systems.
Transition Schedules and Objects Your child may need more information than you require in order to successfully understand and navigate transitions. You may need to provide him with more information about what is coming and what will happen. Challenging behaviors may result from a breakdown in understanding what is coming or what is expected. Create a transition schedule such as a white board with icons and/or line drawings. Some children benefit from a basic checklist that they can “check off” as they go. Others need a transition object (e.g. a teddy bear, or something else that is comforting) in order to successfully navigate transitions.
Demand-free time after school All children are tired to some degree or another after school. For some children, the social demands of school have left them with very little in the “tank” at the end of the day. Behaviors may occur because the child needs rest from social and other demands. Consider providing 30 minutes or more of demand-free time (e.g. no homework) after school. Pair this with a timer and allow the child to engage in something that is soothing, restful and relaxing. Don’t pair this with their favorite and most reinforcing activity-save that for after they complete what you want later in the evening, especially if that involves homework or chores. Engage them in a schedule with demands (homework and chores, etc.) after a period of rest.
Homework and Chores A child may balk at the idea of homework and/or chores, which are regular expectations of most parents after school. You may find that children engage in a lot of challenging behavior around these two areas. Consider the rest time after school as the first line of defense. Then, consider using a visual system that breaks down what they have to do, how long they have to do it, and when they are finished. Break things into smaller pieces (called “chunking”) and consider pairing with breaks in between each piece. Show visuals of what you expect the finished product to be. For example, what does a clean bathroom look like? Show each part in a picture format.
Token System Your child may not be particularly motivated to engage in things that are outside of his/her interest area. Challenging behaviors may occur despite your efforts to provide visual structure and break things into smaller pieces. She may need a more tangible way to motivate her to comply with what you want. Consider adding in a token system designed to provide reinforcement for desired behaviors. If possible, mirror the ones used at school if they are effective in motivating the child to comply. Creating a “First, then” procedure allows the child to see that after they do what you want, they will get something that they want. For example, “first clean bathroom, then 20 minutes of iPad” is a reasonable expectation. Provide tokens (stickers on a chart, poker chips on a velcro board) for each step of the bathroom clean up. Make sure you follow through with the earned reinforcer once they’ve complied.

Summary

Challenging behaviors in the home and community are never easy for parents or caregivers to address. Working with your school team, you can come up with ways to support your child so that they understand what you want and have the tools to engage in replacement behaviors that are acceptable to everyone. Many children with disabilities benefit from the same basic principles of PBS that are used in schools. A focus on prevention can decrease stress, increase compliance and teach replacements that lead to better behavior in all settings.