by ASF COVID-19 Research Grant Recipients Hannah Rea, PhD, University of Washington and Shalini Sivathasan, Emory University

The pandemic has created challenges for families, adults, service providers and researchers.  If families had a problem seeing a clinician before the pandemic for an autism evaluation, they have an even harder time now.  Service providers and researchers had to figure out how to continue their services, even though they previously had little training in telehealth and tools they could use over telehealth. A comprehensive evaluation is not only necessarily for specific interventions, but it helps families better understand their child and their challenges and strengths. It’s also important for researchers to confirm diagnoses of autism when they’re trying to run studies about autism. Thus, it’s important for families, adults, providers, and researchers to continue these evaluations remotely and to provide accurate information.  Evaluations done over the internet through video conferencing may be temporary, but they might not be and some families may even prefer them.  It’s important that these evaluations are accurate, valid, that families participate and that clinicians feel they are capturing the information needed to do a thorough evaluation.

Through a COVID Research Grant, the Marcus Autism Center and the University of Washington are collaborating to understand the feasibility and effectiveness of remote telehealth options as well as adaptations to in-person evaluations.  These adaptations could be slightly different activities to elicit features of autism in an evaluation, using face masks, or including a broader array of behavioral assessments to better understand both autism features but also cognitive abilities.  The Marcus Center is focusing on children, but UW is including adults.  Both sites will be collecting information from participants (either themselves or parents) on which adaptations work well and which ones do not.  This will play a big role in determining if an adaptation or method of data collection is feasible going forward. 

Also, in addition to getting feedback from individuals and families, clinicians will also be asked how they felt about the new mode of assessment.  It’s important to understand how these adaptations are interpreted by those that are making that diagnosis.  In order to determine if the new adaptations allow us to collect the data needed, the new adaptations will be given to children who have already received an in person assessment, or be retested in adults when they can come in face-to-face.  Luckily, this is starting to happen already at many clinical and research sites.

This work is an important step in helping the autism community determine what worked and didn’t work during the pandemic.  Working collaboratively across sites will allow us to provide a coherent picture of how assessment procedures have been adapted.  We look forward to learning how other sites are adapting their procedures as well.  This project, however, will provide an evidence based approach to determine if these changes and adaptations are valid.  It will also contribute to the development of better procedures for when social distancing procedures are eased.  Can, and how, should some of these adaptations and be used to help with the diagnostic process when we are out of the pandemic?  What should stay?  What should be dropped?  The goal is to not only to understand the validity of these adaptations, but to share what is done, what worked and what did not work across different ages, severity levels and places around the US and in the future, around the world.  

Thank you to the families and adults who are going to contribute their valuable time to these studies.  The results will help inform clinicians on how to conduct assessments in the future.  Also, thank you to ASF for providing support to the studies and the collaboration.  

For more information on where the data for the studies is coming from go to:  https://psychiatry.uw.edu/project/connectivity-in-the-brain-and-autism-cobra-study/ and  https://www.marcus.org/autism-research

by Kenny Valdivia, autistic self-advocate

My name is Kenny Valdivia, I am from Los Angeles, CA and am on the Autism Spectrum. My whole life has been a roller coaster ride going from school to school, making friends, socializing, speaking my mind and trying to find what I want to do with my life. I am currently 25 years old and in January 2019 I came up with the idea of starting my own YouTube channel to share my personal experiences living with Autism and sharing very personal stories and what I’ve done to overcome obstacles and talk about what obstacles I want to overcome that I’m still trying to overcome as well. I also profile others on the spectrum where they share their goals, accomplishments and struggles.

One of the things that I’ve always loved is movies and music as it would take me out of this world and to get away from problems I was facing in the real world. Another thing I been able to do with my channel is I have been able to reach certain actors and entertainers affiliated with some of my favorite movie franchises of all time and I desire to rock Hollywood’s world and be able to interview bigger names and those whose work has really cheered me up and got me through some of the roughest moments in my life.

To learn more about me and my YouTube channel, please visit: https://www.youtube.com/c/KennyValdivia95/videos

We are in the midst of a 2nd COVID-19 wave and it could get worse before it gets better. We know more than we did 8 months ago, and in partnership with the Childrens Specialized Hospital of NJ, ASF has compiled summary of how to manage 10 Common Issues in the Second Wave of COVID-19. A short list of main points are found here, but you should really check out this amazing presentation that Adrienne Robertiello from CSH put together, which is friendly for phones and tablets:

  1. Groceries: try to keep a sufficient supply of nutritious foods at home. Be prepared for shortages if you need special foods. And you can get an extra bag or can without feeling like you are hoarding. If you cannot get food delivery or can’t afford it, consider coordinating a pandemic ‘pod’ or ‘bubble’ to take turns shopping. Use social media networks to ask for help. Friends and strangers want to help as much as you don’t want to ask. You can also call the USDA National Hunger Hotline at 1-866-3HUNGRY to help find local food banks or pantries.
  2. Work: To prepare for fully-remote work, set up a plan of communication, file sharing and distribution or exchange of documents or materials. Communicate with your employer on what needs to be in place. The PDF file has links on employee paid-leave rights.
  3. Child’s Education: Right now, schools are providing education to students n a variety of ways which may change. Reach out to your school’s administrators to ask about any preparations you need if things change to fully-remote, especially supplies. Also, contact your child’s district case manager or special services staff to ensure there is at least an attempt to meet the implementation of your child’s IEP.
  4. Stress relief: It is important to prioritize self care. Take time to practice stress management techniques for you. There is an ASF/CSH podcast that is called “mindfulmess to mindfulness which may be helpful. Other links are on the PDF.
  5. Exercise plan: Your regular workout routine at a gym may be a think of the past or it may shut down soon. Exercise can be helpful for your mind and body as well as to reduce stress. You can exercise at home by walking up and down the stairs, dancing, or taking a walk. You can even use cans of soup as weights.
  6. COVID-19 testing: There are more ways to get tested than there was in March. You should contact your municipality or local library to learn more about how this can be done. There are links to community based testing sites in the PDF.
  7. Medication: Call your doctor and ask for a 3 months supply of your essential prescription and over the counter medications.
  8. Supplies: Consider investing in a pulse oximeter or no contact thermometer. A pulse oximeter can measure oxygen levels in the blood by clipping to your finger. It is not a screen, but a way to monitor your symptoms if you are diagnosed. A thermometer will help detect one of the hallmark signs of COVID-19: a fever.
  9. Sanitize: Try to keep a reasonable supply of hand sanitizer, disinfectant wipes, masks and household cleaners on hand. Disinfect regularly. You can make at home sprays with diluted Lysol, bleach or isopropyl alcohol.
  10. Masks and PPE: There are more masks available than there were in March and April. Buy some. Make sure the masks covers both the nose and mouth. ASF and CSH presented on a webinar that helps families get their family used to wearing these masks if they are bothersome. Most states have mask mandates, but even if you live in a state that does not enforce one, you should wear one when you leave the house.

In case you missed it, the PDF with links can be found here:

Good luck we will get through this together.

a poem by Scott Lentine, autistic self-advocate

As I enter my next decade
I aspire to achieve many new goals
Seeking to develop fresh relationships along the way
Before I am old and gray
I hope to have many years of fulfilling work
I would like to assist others in achieving this goal
I am ready to find my purpose in life
And be a key figure in fighting this fight
Acceptance in the community is crucial for us all
Everyone needs to be embraced for who they are
And have resources to help them reach for the stars
And to break down all the walls
It is time to realize that every human wants opportunities and a complete
We need to give each individual with disabilities the services they need
To make their lives full and independent

About the Author:
Scott Lentine is a 33 year old autistic self-advocate. He works as an administrative assistant at the Arc of Massachusetts, and as a paralegal at a law office in Billerica, MA. In his spare time, Scott loves writing poems and spending time with family, friends and his dogs. To learn more about Scott, you can visit his blog here.

a guest blog post by Liana Klin, ASF Summer Associate

I have grown up being taught everything there is to know about ASD with a parent that leads an autism center in Atlanta. I was often exposed to house guests with autism, attended the annual Autism Walk in Atlanta, received daily statistics regarding ASD at the dinner table, and volunteered within the autism community. These experiences and constant discussion about ASD has given me a unique perspective that I try to take advantage of in a less knowledgeable public. I am hyper aware of those around me on the spectrum, and this includes those around me in both my private high school and the current university that I attend. I have learned that not everybody is going to look out for others, and I urge you, reading this, to take what I say into consideration and use it to encourage yourself to be kind to those that may not be like you.

Growing up I attended a “progressive” school in Atlanta, Georgia, where being ‘weird’ was pretty normal, whatever ‘normal’ really meant. People familiar with my high school often joke that it’s  full of unique people with strange talents, especially because my school allowed us to dress however we chose, worked to highlight our unique talents, and tried to make student-teacher relationships as strong as possible. Unfortunately, it is difficult to create the ideal environment for anybody that differs from the ‘norm’, even with the constant efforts my high school put forth, and students on the spectrum still struggled to fit in more than others.

People that were less aware of these students’ social differences thought they were annoying or would subtly make fun of them. This was not okay, though I have definitely been guilty of it. Along with many prejudices that others and myself have, it is important to constantly be checking yourself for these hurtful oppressions. Students that attend non-specialized schools tend to be higher functioning and not as unaware as you may think. In one of my English classes, a student said to the class she was on the spectrum and is aware that she was different. 

I began my undergraduate education at Tulane University in 2018, where I was surrounded by a different ‘norm’ than I was used to. Many big-city, outrightly wealthy, and honestly, intimidating people sat beside me in my classes. People were less likely to be rude to others and speak poorly about strangers, and more likely to just do their own thing and pay no mind to those that are uninvolved in their social life. While being in this type of environment, it is easier not to feel judged or watched at all times, though this also means students that do need a social push in the right direction tend to become more isolated. For example, I had a calculus class of about 50 people, and towards the front of the lecture hall sat a student on the spectrum. This student sat alone and paid more attention to what was being taught than anyone else in the room, due to the disinterest in most other students on the material. He frequently raised his hand to ask questions to our professor, who also was somewhere on the spectrum and had difficulties giving sensible answers. This student frequently corrected the professor, which caused the class to erupt in giggles.

Throughout the semester, him and I were often two of the first few students to enter the lecture hall, and as I do with anyone, I would always greet him with a smile or a “hi”. What became somewhat of a ritual, evolved into a distant and near silent friendship between the two of us. If I entered the classroom a little late or with a friend and forgot to go out of my way to say hello, he would turn around and smile until I smiled or waved back. If he corrected the professor, he would turn around for some sort of reaction out of me. I honestly don’t even think the friend I sat with in that class had any idea of this communication between me and the boy in the front row.    

A large campus is intimidating, and not everybody is going to look out for others. Small acts of consciousness and kindness can be vital to those with social differences and can also push those with ASD to have a college experience that typically developing students are able to integrate into, usually, a lot easier. I still see this student from my calculus class walking alone to and from classes, and I just hope that he has other friends saying “hi” to him in his classes. There is not a need to go out of your own norm to make those with ASD in school feel better acclimated, we should all just treat those different than us with the same kindness and respect that we give to anybody else around us. 

a guest blog post by Lee Anne Vetrone, Development Manager, Spectrum Designs Foundation

Six or so weeks ago, when the Covid-19 crisis ramped up and effectively halted life as we know it, the team at Spectrum Designs Foundation was on schedule to break previous sales records, offer more individuals with Autism paid employment opportunities and open the doors to our anticipated new location in Westchester County, NY. Immediately, thoughts shifted to the safety of our staff, then to sustaining our non-profit businesses -custom apparel, gourmet granola and a boutique laundry. When New York State ordered all non-essential businesses put on PAUSE in an effort to stop the spread of the virus, two of our three businesses were deemed essential – Spectrum Bakes and Spectrum Suds, while the Spectrum Designs’ production shop was shuttered. Our staff, 75% of whom are on the spectrum, were sent home and focus turned to providing remote learning opportunities and daily calls to stay in touch. But, what of the business? Spectrum Bakes and Spectrum Suds remained open operating with a neuro-diverse crew of 2-6 individuals.

Once staff was set-up with scheduled online training and remote work schedules, we pulled together the team to brainstorm next steps, as has always been the norm for our game-changing non-profit. With the larger of our enterprises, Spectrum Designs, closed during the pandemic –how do our still growing enterprises – granola and laundry – rise to the occasion – stay afloat, keep on mission and be of service?

Keeping in mind, limited resources and staff – we created two campaigns for our enterprises that have turned out to be game-changers. Spectrum Bakes created the Snack-in-Place gift box -as a way for people to stay connected to colleagues, friends and families near and far. The boxes have been a hit and have shipped all over the U.S. to much cheer! As a way to give back to a community that has given us much, Spectrum Suds created the “Free laundry for 1st responders and healthcare professionals” initiative. Offering to take a “load” off – of laundry, that is to those sacrificing much for our safety.

Although, not able to fire up our machines to screen print and embroider custom apparel, we were able to tap into the promotional items end of our business and creatively pivot to procure desperately needed PPE – personal protective equipment – for front line and essential workers, businesses, municipalities and nonprofits. Working diligently, our team successfully sourced ethically priced, certified and vetted items, while ensuring a quick delivery for those in need. 

The success of these business “pivots” have meant the world to our organization – providing much needed income at an uncertain time, given us positive press-worthy stories to share with donors and the media and has secured a place for our staff to learn and work once we are given the go-ahead to come back to work!   

Spectrum Designs Foundation is a purpose-driven organization with an important mission – to help individuals with Autism lead full and productive lives through the world of work. As a non-profit, 100% of profits go to advance the mission. Via three separate social enterprises, Spectrum Designs, Spectrum Bakes, and Spectrum Suds, opportunities are created for employment, empowerment and growth.  To learn more please visit www.spectrumenterprises.org.

a guest blog post by Molly Reilly, BCBA

We are living in an extremely unique situation and it is important to acknowledge that you will be times when you give in, you are human. Now is probably not the best time to teach new skills; rather, it is a perfect time to work on strengthening skills that your child has mastered. If possible ask your child’s teacher or therapist for a list of mastered skills for you to work on while at home. As a bonus this will help your child generalize skills to new people and settings.

What kind of skills? Here are some examples:

Functional Communication
This is the ability to communicate an individual’s wants and needs is an essential life skill. While now is not the time to intensely teach new skills, it is always a good idea to encourage your child to communicate their basic wants and needs in whatever manner is most appropriate for them(e.g. verbal speech for verbal children, sign language for preverbal children with strong imitation skills, Pecs for preverbal children with strong visual discrimination skills, etc.). Functional Communication Training (FCT) is a fundamental positive behavior support strategy in which an individual is taught an appropriate communicative behavior to replace an undesirable behavior. For more information on FCT including implementation steps please see Afirm’s FCT module.

Coping Skills
Coping skills are also a fundamental life skill that can be particularly helpful in times of uncertainty and anxiety. Examples of potential coping skills include deep breathing, listening to music, taking a walk, etc. To further promote coping skills consider creating a calm space in the house where anyone can go and take some time to relax may also be helpful. The area could include calming items such as soft blankets, sensory balls, pillows, sensory bottles, stuffed animals etc. UNC has developed a wonderful toolkit that contains a section on promoting calming and coping skills including visual supports and recommended mindfulness apps.

But how?

Use Reinforcement
Uncertainty is hard for everyone – reinforce everything, especially flexibility! Positive praise is particularly important for children that thrive on attention. Be sure to keep their tank full by providing lots of praise throughout the day by aiming to provide five positive statements to every negative statement. Emphasize all of the things your child does right! (e.g. playing cooperatively next to a sibling, trying a vegetable, taking turns on the ipad, asking for help, throwing away garbage, etc.). In addition to providing ample praise using simple and positive language can also be helpful. Rather than saying “I can’t play bingo with you right now” try saying “I can play a game with you later today but now you can play legos”. For children motivated by activities or tangible items try sure to provide them with access to a desired activity/item following instances of desired behavior.

But use them wisely
Try not to allow free access to reinforcers by laying out each of your child’s favorite toys at the beginning of the day in hopes they will entertain themselves so that you can get things done. Rather, present desired items or activities individually and rotate them, this is especially important for highly desired items such as technology. The following strategies may help differentiate academic screen time and leisure screen time:
• Different devices (e.g. laptop for academic tasks and tablet for leisure)
• Different locations (academic screen time in kitchen and leisure screen time in living room)
• Different cases (academic screen time in blue case and leisure screen time in green case)

You have a lot of responsibilities (e.g., plan meals, do laundry, clean, teach, parent, and for some people telecommute) so be sure to schedule in special 1:1 time with each of your kids. Truly make this their time and follow their lead. Try not to direct the activity; rather, notice what your child enjoys and simply join. Even if this means sitting next to them while they play with their tablet that is okay! Make comments and praise if appropriate (whoa! Look at that car!) simply rub their back.

Safety First
To ensure that everyone in your house is safe it may be a good idea to take a careful look around your home and make modifications that reduce the risk of injury. Examples include putting potentially poisonous materials such as keeping medicine and cleaning solutions in areas only accessible by responsible adults, removing wall hangings, and rearranging furniture. In the event that challenging behaviors do occur, removing yourself from the situation (as long as your child is safe) and having a basic safety plan may be a good idea but consult with your child’s BCBA for specific recommendations.

Pick your battles
Identify times that can be problematic (e.g. at the end of the day when everyone is tired) and give yourself permission to not be perfect and allow access to highly preferred items or activities such as screen time. Also avoid giving a direction unless you are willing and able to carry through. If you instruct your child to hang their coat up on after they throw it on the floor, be sure you are willing to (and have enough energy) carry through with the instruction. As I stated above, give yourself permission to not be perfect! Parents of typically developing kids who find themselves trying to homeschool openly acknowledge the extreme difficulty. #homeschool is a trending hashtag on social media and some of the posts are hilarious

INSTEPPS is a company in CA that utilizes NDBIs and has some great resources on their facebook page including:

Authors:Erin Lopes, CRNP, Nathan Call, PhD, Muhammed Wassem, MD and Alycia Halladay, PhD

For many families with autism, especially those with co-occurring medical conditions like seizures, visits to the hospital emergency department (ED) can be frequent.  Some behavioral issues send families to the ER whenever there are no effective crisis management services available.  However, now that hospitals are seeing an extremely high volume of patients with COVID-19, many families do not want to risk exposure.  Families with children with autism and additional complex medical needs may feel isolated from their child’s outpatient healthcare providers at this time.  Being sheltered at home and isolated from their child’s regular health care team may lead families to feel that a visit to the Emergency Department (or Room, ER) is the only solution to seek immediate care.  Here are some practices that have changed since states have imposed shelter in place orders.

First, try to avoid ER visits if possible.  How is this possible?

Many outpatient physicians and nurse practitioners are seeing patients virtually through telemedicine.  Maintaining ongoing services or addressing emerging problems with your doctors is a good way to avoid going to the ER.

First you can do this by preparing for your telehealth appointment.

  1. Call your doctor. Families/caregivers should call their child’s primary care provider and subspecialist’s offices (such as psychiatry, psychology, neurology or gastroenterology) to find out what telemedicine procedures are in place. If telemedicine is available, families should continue with already scheduled outpatient appointments or schedule new appointments if needed using the telemedicine platform.
  2. Your child’s outpatient health care providers should be able to assist you with identifying what technology is needed to initiate a telemedicine appointment. They can also help decipher what technology or Internet bandwidth is needed.  These need to be addressed before the first appointment.    
  3. Depending on your child’s healthcare needs, some families may consider setting up telemedicine technology from home in advance of an outpatient telemedicine appointment.  For example, making sure programs such as FaceTime on iPhones are functioning. Again, call your child’s outpatient providers to learn what technology their office is using for telemedicine appointments. 
  4. Call your child’s healthcare provider’s office to request refills as early as possible to avoid running out of necessary medication. Pharmacies may be operating under increased demand, which can lengthen time to refill routine medications.   

For families with children who have autism and epilepsy 

  1. If your child has an upcoming appointment with neurology, call now to inquire about their telemedicine practice and procedure
  2. If your child is taking maintenance medication(s) for seizures make sure to call in refills as early as possible to avoid running out of medication 
  3. If your child has breakthrough seizures and is prescribed rescue medication for breakthrough seizure, be sure to check the expiration date on the rescue medication.  If the rescue medication has expired or about to expire call in for a refill  
  4. If you have questions about what to do if your child has a breakthrough seizure call your child’s neurologist.  Consider developing a Seizure Response Plan with your child’s neurologist if you don’t already have one.  More information about Seizure Response Plans can be found on the Epilepsy Foundation website: https://www.epilepsy.com/learn/managing-your-epilepsy/seizure-response-plans-101
  5. The Epilepsy Foundation also has a list of specific recommendationson when to consider going to the ED during or after a seizure.

If your doctor feels your child needs to be urgently evaluated in the ER, remember the basics you’ve heard so far about preventing transmission of the virus:

  • Hand washing with soap and water for at least 20 seconds
  • Avoid touching your eyes, nose and mouth
  • Cover mouth and nose when coughing or sneezing with a tissue
  • Avoid hand shake
  • Limit touching
  • Maintain social distance
  • Avoid sharing items 
  • Use face masks if you have to go out in the public

Then when you get there, remember:

  1. This is a difficult time for everyone in the ED. Early preparation will help you, your child and ED staff make the visit as smooth as possible.  Do your best to be patient and calm through the process, as this will help your child stay calm as well.
  2. Explain to the ED staff what approaches for routine care such as vital signs work best to keep your child calm.
  3. Have a current list of your entire child’s medications including the dose and frequency written down on a piece of paper that is ready to bring with you.  Consider keeping this list folded up in your wallet or stored in your cell phone.
  4. Families with children who receive nutrition via tube-feeds should add current tube-feed formulas on their child’s medication list.  
  5.  Once you get to the ED remember that they are likely understaffed and could use your help. Show them how to get the cooperation from your child and offer to assist them with things like administering oxygen or putting on a blood pressure cuff.   
  6. Most hospitals are not allowing visitors during the COVID-19 pandemic.  Call ahead to find out what the procedure is before you get to the ER. It is possible that you may not be able to go with your child while they are being medically evaluated in the ED.  Consider packing a bag with your child’s preferred personal items and/or communication devices such as tablets/portables AND chargers that go with them.  If the ED staff permits you to accompany your child, consider bringing a small bag of personal items for yourself.   
  7. It may be helpful to ask your ED if they have Childlife specialists available. These are professionals who specialize in helping children cope better with being in a hospital. They are often able to provide items to help keep your child distracted or work with the medical team to adapt the environment or protocols to make them more conducive to your child’s particular needs
  8. You may also know your local ED staff and know their procedures. It is a good practice to call to the ED ahead of your arrival to alert staff you and your child are en route and inquire about any new changes to entering the ED and the registration process.
  9. If your child is immunocompromised make sure ED staff are aware.   

A parent of a child with a rare syndrome described her child’s experiences in the ER here.  

Finally, don’t allow fear to prevent you from seeking care if your child has an urgent medical need.  However, regular communication with your child’s outpatient providers and continuing preventative care through use of telemedicine may help decrease the likelihood of an ED visit. 

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