Are you looking for a place to help you find autism-related resources? Looking for quality education and training about autism and related topics? Are you looking for support from someone who has been down a similar path? The Autism Society of Greater Wisconsin and our local network of affiliates might be what you’re looking for.
The main purpose of the Autism Society of Greater Wisconsin is to offer a community for those who are committed to increasing the quality of life for people with autism and their families. Our local network in Greater Wisconsin makes us unique and allows us to provide direct support in local communities while staying connected at a state and national level. Our mission and vision are specific enough to give us focus while being broad enough to give us flexibility to shift our programs to meet growing needs. Our network is powered by a broad base of volunteers with varying experiences and expertise.
Here are three reasons to connect with the Autism Society of Greater Wisconsin:
- We Offer Community: a Welcoming Place of Belonging and Acceptance
All of us look for a place where we feel welcomed, understood, and accepted; a place where we belong. Being part of a community that accepts and celebrates you, as you are, can play a big role in your mental health and overall well-being. The Autism Society of Greater Wisconsin is made up of a group of people that understand the wide range of experiences of people with autism and their families, and offers a place of nonjudgmental connection, and support. Across our affiliate network, we have groups for autistic teens & adults, groups for parents, and events for families. In 2020, almost all these groups have shifted to a virtual setting which makes them even more accessible! If you or someone you’re working with could benefit from connecting with others, please check out our groups and events!
- We Offer Quality Autism-Related Education and Training
The Autism Society of Greater Wisconsin’s educational programming reaches over 1,500 people annually. We’re proud of the quality, cutting-edge information, and the nationally recognized speakers featured at our conferences and workshops each year. From our 3-day annual conference in the spring, to Autism 101 workshops, to trainings for community organizations and first responders, we are committed to raising awareness of autism, and most importantly, increasing acceptance & understanding. Our educational programming aims to provide timely information and strategies for supporting children and adults with autism. We also aim to shape the way people think about autism and disability, moving from a deficit model to the more strengths-based social model that focuses on changing the systems of support, rather than changing the person.
- There’s a Place for Everyone
If you have a social work background, you are probably familiar with the systems theory or approach. As a very basic explanation, the systems approach acknowledges that people are part of many different systems that all influence their well-being, behavior, and experiences. Changes in just one part of the system, can affect how the whole system functions. Which means to impact one person’s life, we need to look at the systems around them. The services and supports available to a person will have a huge impact on a person’s quality of life, in addition to their family structure, the quality of the small interactions throughout their day, etc. We take a similar approach at the Autism Society of Greater Wisconsin. We know that to increase access to a quality of life for those with autism, we need to improve the systems that people with autism interact with. This is why we have programs for autistic children and adults, their families, schools, employers, communities, etc. The better our schools are supporting those with autism, the better life will be for students with autism at school and beyond. The more employers know, the more they can accommodate and support a neurodiverse workforce to be successful. The more the public understands people with autism and the importance of neurodiversity, the less stigma and discrimination people with autism and their families will face, and so on. With so many systems to affect, we need all perspectives and representation from a diverse range of backgrounds!
There are other reasons to connect and many specific program offerings that I didn’t mention here. So please, take some time to browse our website and reach out with any questions. I’m always excited to talk about the Autism Society, our vision, and how we’re making an impact on the quality of life for people with autism and their families. Here are 5 ways to connect and get involved:
- Like us or follow us on Facebook, Instagram, and Twitter.
- Connect with others in the Autism Society community by joining a virtual group or our Facebook group.
- Volunteer! Do you have experience or expertise to share? We’d love to hear from you. We’re always looking for blog writers, speakers, or group facilitators.
- Do you want to support our mission and vision but don’t have time to spare? Donate to support our programs and services! As a nonprofit organization, we rely on the generosity of our community to fund our services. Every donation has a huge impact!
A Video Explanation
Test your EQ
Ally: Be an ally
Check with your client for the importance of race and gender. This type of question can be revisited after several sessions. Do not under estimate how your black client has been conditioned to minimize themselves in the presence of white people.
It is important to understand how society views the black community. As a mental health professional, you must use the person-in-environment (PIE) theory to adequately address and understand their culture. Have consideration for how the news and media portrays black people and enforces stereotypes.
Use Person Centered Therapy as the method of engagement. A Black person on the spectrum is most likely to be different from their cultural upbringing. This person will have a deeper sense of not belonging. The need to be seen, heard, and validated is pivotal.
For clients over the age of 18, open ended questions may provoke the subconscious need to mask and give a rehearsed response. It is likely to create anxiety. Probing questions are more structured and allows the individuals process of thought and opinion to be authentic.
Be mindful of the impact that Black people are not equally protected by local law enforcement. This has been an ongoing issue for numerous years. When Black people and white people hear police sirens, there are two distinctly different psychological experiences. One of safety and security. The other fear and worry. According to columbiapsychiatry.org “The Black community suffers from an increased rate of mental health concerns, including anxiety and depression. The increased incidence of psychological difficulties in the Black community is related to the lack of access to appropriate and culturally responsive mental health care, prejudice and racism inherent in the daily environment of Black individuals, and historical trauma enacted on the Black community by the medical field. Moreover, given that the Black community exists at the intersection of racism, classism, and health inequity, their mental health needs are often exacerbated and mostly unfulfilled. Issues related to economic insecurity, and the associated experiences, such as violence and criminal injustice, further serve to compound the mental health disparities in the Black population.” This is your opportunity to ensure a safe space for healing with full acknowledgment of systemic racism presence in society.
No one has all the answers. Not even the CDC. According to cdc.gov “Black and Hispanic children continued to be less likely to be identified with ASD than white children. These differences suggest that black and Hispanic children may face socioeconomic or other barriers that lead to a lack of or delayed access to evaluation, diagnosis, and services.” The discrepancies I have with this report is that the CDC makes the assumption and suggest that autistic black and Hispanic children are disadvantaged by socioeconomic barriers that lead to a lack of or delayed access to evaluation, diagnosis, and services.” The truth is that the medical and educational professionals do not assess and evaluate black and Hispanic children equally. As a black woman I have spent most of my life stereotyped as single, single parent, poor, uneducated, and unmarried. This narrative has improved. In recent years it is noted that Black women receive degrees at a higher rate, are among the most educated, vote at higher rates than the rest of the population and starting more businesses than any other groups of women. Despite the hard work and tenacity of black women, the CDC’s August 27, 2019 report continues to push the narrative undiagnosed minority children face socioeconomic or other barriers instead of the blatant fact that they are overlooked and not included.
Keep in mind that it is not the responsibility of black people to educate white people on how to correct problems created by white people. When seeking knowledge based on culture, you must be willing to ask yourself difficult questions. According to psychology today, white therapists should ask themselves:
“Do you feel competent to ask about, respond to, and support clients regarding their experiences of racism, oppression, and intersectionality?
Are you willing to address racial differences with clients early in therapy?
Can you talk about white privilege and what it means to be white?
If you identify as white, identify several areas of privilege you did not realize were a privilege of being white until you learned about white privilege.”
Do you spend time with around the population you serve outside of work hours?
Reading books, watching documentaries and cultural diversity training is the bare minimum. Therapists should have experience working under a supervisor who can skillfully help navigate issues surrounding culture, race, and stigma with their clients. Autism Spectrum Disorder does not discriminate, and neither should the mental health industry and the professionals who deliver care.
Test Your EQ
Emotional intelligence (emotional quotient or EQ) is the ability to understand, use, and manage your own emotions in positive ways to relieve stress, communicate effectively, empathize with others, and overcome challenges. Have an honest understanding of your strengths and limitations before seeing a client of color. White fragility and microaggressions are detrimental to the therapeutic process. According to Zencare.com, the work of awakening to our privileges and biases, understanding systems of oppression, and creating a safe and understanding space for clients is hard, daily, and ongoing work. It can bring up guilt, shame, and defensiveness. Practice self-compassion and patience, lean into the tension, and as Dr. Chandy put it, “move through it towards connection and engagement” with clients. When dealing with emotionally sensitive issues such as race, it is important to be your best self. Addressing the issues of Black people and Autism will require a level of self-care and genuine empathy that may not come easily. If your emotional intelligence is in check, you will be prepared to face the tough issues with all parties feeling seen, heard and validated.
Ask yourself a few simple questions:
Do I have frequent disagreements?
Do I know the difference between assertive and aggressive?
Do I feel that others are too sensitive?
Am I too sensitive?
Do I have difficulty understanding others points of view?
Do I avoid difficult conversations?
Am I a people pleaser?
According to psychologytoday.com, “an emotionally intelligent individual is both highly conscious of his or her own emotional states, even negativity—frustration, sadness, or something more subtle—and able to identify and manage them. Such people are especially tuned in to the emotions that others experience. It’s understandable that a sensitivity to emotional signals both from within oneself and from one’s social environment could make one a better friend, parent, leader, or romantic partner. Fortunately, these skills can be honed.”
Investigate the latest journals, peer reviewed articles and government websites about Black people on the autism spectrum. Question the equality in research. Understand that until there are research studies and organizations that focus on people of color on the autism spectrum, there will always be a lack of representation, medical assistance and services.
An effort to identify minorities on the spectrum will require, addressing the relationships with families. Trust, education and follow through is key. Counseling 101: Establishing trust and rapport is an essential part of a healthy therapist-client relationship. If the client and the community feels embraced, safe and respected, there can be relationships formed. Next, you must educate the family/ community about autism. Talk to Black people who are adults on the spectrum and let them educate you on their experiences growing up. This can give valuable insight to identifying black children. As an ice breaker use the nine-point checklist to get the conversation started, before using medical terminology in a manner that can be off putting. This has nothing to do with socioeconomic status or intelligence. The basis of Autism symptoms are that of white males and the culture which surrounds him. For instance, eye contact has different meanings for different cultures. Indirect eye contact is a sign of respect and humility in some cultures. That same behavior may be judged as lying, deceitful, untrustworthy or dangerous to a white person in a position of authority or a white person who feels s/he is the authority just because they are white. Simply put: culture matters and you must do your due diligence to get the best result. Follow through is the game changer. After establishing rapport and making the connection you must commit to the relationship. Following through with being the change that is needed to help to connect with services like our white fellow Autistics, would mean so much. Autistic people of color need allies. Allies who are determined to see change and be a part of it.
Nine Point Check
It’s important that you understand the culture and language of the parents so you can address the child/ individual appropriately. Below, is a list of common descriptions made by black caregivers describing their child’s behavior. Your active listening skills can make all the difference for a black person to get early treatment and services.
- Caregivers complain about the individuals refusal to speak. Delayed speech. Pointing to desired objects, non-verbal. Episodes of unexplained frustration due to communication difficulties.
- Individuals are judged to be rude and dismissive. Described as “unfriendly” or “mean” because s/he doesn’t smile and usually has a flat, serious expression. Does not change demeanor for authority figures.
- Parent describes the child as quiet and well behaved. The individual is overly compliant: goes along to get along with minimal pushback.
- Individuals are “different” from their siblings. Very sensitive to their environment, whereas siblings and other peers are able to adjust. i.e. lights, sounds, city living.
- Lack eye contact and/or engage in empty stares. Lack responsiveness to command for interpersonal engagement. i.e. “Come here, look at me when I’m talking to you and do as I say.”
- Child/ individual enjoys solitary activities and interests. Does not want others touching their things.
- Described as simple and naive. Person appears to allow others to use and take advantage of him/her.
- Avoids arguments and altercation. The individual is not ‘tough’. Likely bullied by family member(s) and peers.
- Does not strictly identify with black culture. Sees self as an individual first and black person second. Has their own sense of style. Dress for comfort. Not to impress.
Integrate Black therapists in practices where most professional staff are white. Consult with Black clinicians. Pay them their worth. Be transparent and open to permanent change. Take a stance. Use your privilege and your power to bring attention to the lack of research and intervention for people of color on the spectrum. In the United States and other countries around the world, people of color rank low in Maslow’s Hierarchy of needs. Systemic racism suppresses people of color and the need for control and order in their lives. People of color lack basic security and safety needs such as the policing in our communities. Being an ally can help to bring change in areas that people of color cannot reach.
For a printable version of this blog post, click here
For a video explanation, click here
- Katschnig H. (2006). Quality of life in mental disorders: challenges for research and clinical practice. World psychiatry : official journal of the World Psychiatric Association (WPA), 5(3), 139–145.
- Emotional Intelligence https://www.psychologytoday.com/us/basics/emotional-intelligence
- Addressing Mental Health in the Black Community NewsFebruary 8, 2019. By Thomas A. Vance, Ph.d https://www.columbiapsychiatry.org/news/addressing-mental-health-black-community#
- Mental Health in the Black Community |www.columbiapsychiatry.org
Reprinted from Autism Society of Greater Wisconsin
Coping. My guess is that if you are reading this blog from Autism Society of Greater Wisconsin, you or a loved one needs coping strategies for this massive pandemic called the coronavirus. That goal is what this blog is for; to provide adults living with Autism spectrum disorder (ASD) or loved ones of those with ASD, with tools to cope with anxiety surrounding the coronavirus (COVID-19) pandemic.
In most of the patients with ASD I have worked with, and in my own experience having ASD, anxiety is a huge struggle. In adults with ASD, it has been reported that somewhere between 31-51% have some form of an anxiety disorder (1). In my own experience with my anxiety, I can tell when it’s at play and when my mind is “jumpy”. I like to refer to it as “monkey brain”. I tend to think of a group of monkeys throwing my thoughts around. How disruptive is that? A group of monkeys throwing your thoughts around. I can feel it. My stomach gets in knots, my hands get clammy, and sometimes my heart races faster. It’s as if my body is reacting to the movement of the monkeys in my brain.
If you asked those closest to me how they know I’m anxious, they would tell you a couple of things. They would start by telling you that all I want to do is plan. For instance, when they want to talk to me about how great something is, and I’ll already be planning something six months down the road. Aside from the future focus, they might also mention that if plans change, I lose my cool — they encounter a hostile and loud version of Sean. Finally, they would tell you they know I’m anxious because I continue to repeat myself over and over, and need to just do this until I calm down.
So how do we manage anxiety around this coronavirus? Both professionally and personally, I tend to think about anxiety in terms of energetic expression. That is, how is the anxiety presenting itself? Is it showing up as heart racing because I’m stuck on something that is changing (i.e. am I ruminating?), or is it showing up as tension in my clavicle? How anxiety shows up tends to be on a spectrum, and I try to match it to the Bio-psycho-social-spiritual solution to the form it takes (physical or non-physical, high or low intensity). See Figure 1-1.
So, what does the research and personal experience tell us about the effectiveness of some of these interventions on anxiety in ASD? For instance, when my significant other tells me she isn’t up to going out with friends, and we have been planning to go out with them all week, my anger level may go from a level to 2 to a level 7 pretty quickly. Upon putting down the phone, my forearm muscles may tense, my hands clasp, and I may not really want to talk with my significant other for a bit. As we know from working or living with people with ASD, rumination is common. Rumination is defined as, “A tendency to think repetitively about the causes, situational factors, and consequences of one’s own emotional experiences, and can be conceptualized as a form of nonacceptance of emotion.” (2). So if a person like myself, with ASD is ruminating about plans changing, energetically speaking, how is the anxiety presenting itself?
In this scenario, we know a couple things: First, my anger went from a 2–7 relatively quickly. Second, my arms are physically showing signs of an increase in tension in the body. Third, I am avoiding the anxiety trigger. Fourth and finally, I am replaying negative thoughts over and over in their head, reinforcing the anger at a level seven. So, if we refer to Figure 1‒1, what combination of solutions might work to address this presentation of anxiety in ourselves or the person we love? First off, we know that the anxiety is presenting itself in both a physical and non-physical expression, so solutions need to be both physical and non-physical.
Physically we might see solutions looking like:
A well established intervention in patients with Anxiety and ASD is exercise. According to researchers, benefits of exercise include, “On-task behavior, academic responding, and appropriate motor behavior (e.g., playing catch) increased following physical exercise” (3). Meaning that exercise, whether it be in response to anxiety or ASD, results in increased executive functioning (the planning part of the brain). People with ASD might have specific physical solutions already identified, if a high interest includes physical activity. For instance, I have an interest in bouldering (a form of rock climbing that is performed on small rock formations or artificial rock walls without the use of ropes or harnesses). This interest, while in some ways isolating, doubles as a physical coping strategy that can increase my socialization. Bouldering in this scenario might serve to address the tension in my body and which leads to an energetic change in my anger level. It is a high-intensity sport that matches the physical energetic expression of my anxiety that shows up as irritability.
Change in Diet
Most of our neurotransmitters are carried from gut to the brain via the Vagus Nerve (9). One of the primary neurotransmitters is Seratonin, 90% of which is stored in the gut. When information travels along the Vagus Nerve, blood sugar levels can affect how that information is delivered. Therefore, too little or too much sugar to the brain can lead to irritability, anxiety, and inattention (may be mislabeled as Bi-Polar, or Attention Deficit Hyperactivity Disorder)(10). So what are some things you can do to help regulate your diet, without consulting your doctor? You could: reduce consumption of foods containing preservatives and other chemicals, prepare healthy meals, eat fresh foods (fruits and vegetables), and reduce your use of sugar (10). These are just some simple solutions, however if you have Diabetes or a complex medical condition which requires consultation, please consult your physician before making any dietary decisions.
Non-physically we might see solutions looking like:
While it might seem too easy, meditation is a simple solution to address the anger expression of anxiety, as it builds awareness of ourselves. Below is a quick video explanation of meditation, but in short, it is a practice of focusing on the present to become more aware of what is going on around us in the moment. This solution comes from a family of interventions called mindfulness-based interventions, of which multiple studies support as an intervention for anxiety and ASD presentations (see 6–8). These interventions are great for supporting emotional regulation. In my scenario, both the sudden shift in anger from a 2–7 and the ruminations which reinforce the anger are addressed with this solution. Using meditation, while it sounds counter-intuitive, forces the brain to stop. Part of the problem with anxiety in people with ASD can be the processing speed of the ruminations. Many people are not aware that a message is on repeat (e.g. “She doesn’t love me because she can’t follow through with plans”, etc.), or that it increases energy; which makes it difficult to derail the emotional expression. However, by forcing myself to meditate, I am forced to attend mentally to the present, and in turn, notice my energy level changing, and my mind on repeat. Once aware, I can then interrupt the thoughts, and challenge the negative thought on repeat. This solution matches both the expression,
non-physical, and high intensity.
One of the greatest challenges I hear from people with ASD and anxiety, is fear of failure. For me, I challenge myself to be brave and face my challenging situation (e.g. talking to my significant other to tell her how I feel). There is an Exposure Cognitive Behavioral Therapy program for managing anxiety in children called “Facing Your Fears” (FYF), which is for children with ASD and anxiety. Children who participated in FYF showed a 66% positive change in anxiety related disorders, as compared to those in the treatment as usual, which only reported a 20% change in condition (9). If you have a child with ASD and Anxiety, consider pairing rewards for tasks that demonstrate bravery. For instance, if taking a shower is scary, consider rewarding your kid for taking a bath and being willing to clean him or herself. The thought being we want to reinforce brave behaviors.
In my example, when my energy has decreased, after a combination of bouldering, meditation, and dietary changes, I must have a conversation with my significant other to outline my concerns in a respectful way. Again, what must be stressed here is matching energetic expression with intensity and form of expression (e.g. low intensity, and non-physical solution).
In closing, as we have demonstrated, there is no one “right” solution to address anxiety around this pandemic known as the coronavirus. However, when it comes to you or your loved one(s) with ASD, refer back to figure 1‒1, and try to gauge how the anxiety is presenting itself today. It can be physical or non-physical, high-intensity or low-intensity, or maybe somewhere in between. No matter the scenario, I hope these suggestions help you during this time.
Sensory integration is the term used to define how individuals receive and process information from the sensory systems. The sensory systems include vision, auditory, taste, smell, tactile (touch), proprioceptive (sense of joint position), and vestibular (balance and movement). Integration of the sensory system is important for completing daily self-care routines including communication, eating, toileting, bathing, dressing, socializing, and completing household management. Effective integration of the sensory systems promotes appropriate emotional regulation and coordination of motor systems.
Children who experience difficulty with sensory integration may demonstrate a variety of responses such as difficulty completing daily routines, socializing, attending to tasks, and navigating environmental demands. A child who demonstrates signs and symptoms of impaired sensory integration may be referred by a doctor for occupational therapy evaluation and treatment. Following an evaluation, an occupational therapist may adjust their sensory based intervention approaches depending on the underlying causes.
Therapeutic activities may include the implementation of a sensory diet to provide appropriate sensory input throughout the day for improved engagement and independence in daily routines. A sensory diet is a daily routine in which a child uses various inputs such as movement, touch, or proprioceptive input to regulate emotional and behavioral responses depending on the time of day or environment. Sensory based strategies are designed to promote improved emotional regulation, attention, and behavioral responses throughout the day.
If you have questions about sensory integration contact us at firstname.lastname@example.org
Source: American Occupational Therapy Association. ( 2017). Frequently Asked Questions About Ayres Sensory Integration. [PDF File]. Bethesda, MD. Retrived from https://www.aota.org/-/media/Corporate/Files/Practice/Children/Resources/FAQs/SI%20Fact%20Sheet%202.pdf