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My name is Dhruv Balaji, and I am a sophomore at Princeton Day School and the author of 9 DIY Experiments Perfect For Children On The Spectrum. My book’s aim is to spark an interest in science within children on the autism spectrum, something that is not emphasized as much as it should be in the real world. Children with autism are generally thought of as less capable than others, but from my own experience, I know that isn’t the slightest bit true. Children with autism learn differently, yes. But that doesn’t mean their passions and abilities within the field of STEAM should ever be limited. This misconception was the main motivator for me to write this book, combined with the fact that STEAM opportunities for children on the spectrum are extremely rare, especially in this new virtual world. 

The book uses science experiments to engage children with autism by creating moderately colorful, intriguing reactions that provoke asking more questions and also a passion for science. It also utilizes visual elements and text meant to simplify the scientific method, and connect the experiments they tackle to the larger world around them. The experiments themselves are designed to be collaborative, to draw families together over gathering household objects to create a tiny parachute, for instance. The creation of this book allowed me to grow as a person in many ways, especially learning about the creative process, and I learned even more about autism and mental disorders in general. This book was designed to be enjoyed by any age and skill level, with something for every reader. One aspect I enjoyed most during my initial research, was evaluating new experiments through the eyes of the potential reader, and noting which elements of the procedure would draw them in. It is my hope that through my book I can make as big of an impact as possible by inspiring children on the spectrum to further pursue opportunities in STEAM. 

For more info, check out Spectrum Robotics, our organization that teaches STEAM to children with autism free of charge. 

A new study published last week has the autism community asking new questions about early diagnosis and prediction.  A publication in Molecular Psychiatry has been titled by the media as “Researchers Claim 100% Accuracy Predicting Autism Risk Factors in Mom’s Blood”.  Disappointingly, one of my favorite sites called IFLS (or I f**king love science) titled it “Algorithm Predicts A Type of Autism With 100% Accuracy Using Mother’s Biomarkers”.  Why am I disappointed in IFLS and other headlines?  Because I don’t think families should interpet or utilize these findings as an established and validated method of predicting autism in their children or potential children.  In their defense, the researchers did not title the study in this way, that was the media’s interpretation.  

This is a story that goes back a decade.  In 2007 researchers at UC Davis had identified specific antibodies in mother’s blood that were associated with an increased probability of having a child with autism.  The idea was that an antibody in mother’s blood reacted to the developing brain of their fetus, leading to brain abnormalities associated with a greater likelihood of an autism diagnosis.  It started with a class of antibodies, then narrowed down to different general sizes of antibodies, and more recently these antibodies were given names.  The theory has been tested in different ways.   Animal models have shown that exposure to these antibodies leads to changes in brain cells in areas that are consistent with autism behaviors.   Children with ASD born from mothers who have these antibodies have been shown to have enlarged head size.  The work has mainly been done at UC Davis, but other groups have also been investigating the link. 

From Jones and Van deWater, 2018. This depicts the maternal autoantibody transmission to the brain, which then affects the size and shape of neurons of the child with ASD.

Of course, it isn’t an all or nothing thing.   The UC Davis group estimated a whopping 23% of mothers with children with a  diagnosis had autoantibodies were present, other researchers studying the question put it at 8-10%.  Regardless of the exact number, this is an increased rate of diagnosis compared to about 1% in the general population.   As a result, researchers in the UC Davis group set up a commercial entity called Pediatric Biosciences, which has since folded, to produce a test that would identify these proteins in mother’s blood so they could be aware of an increased risk of an autism diagnosis.  The goal has been to identify a group of women who have a heightened probability of having a child with ASD so that that information can be conveyed to them in future family planning decisions.

This recent study that calculated the 100% specificity number used machine learning, which is an algorithm developed and run through a computer, to identify which combination of 7 of these autoantibodies were the ones that led to the diagnosis in the child, since presence of just one was insufficient.   For example, if the mother has autoantibodies to something called CRIMP1 and GDA, there was a 100% probability that the child would have an autism diagnosis.  This is interesting, right?

Well, there are reasons to temper your enthusiasm right now and don’t run out and get this maternal autoantibody test or rely on it.  First, the sample sizes were kind of small to make the claim that it had “100% specificity”.   Yes, maybe in these studies, small groups of people with ASD (groups with 20 children or less) also had mothers with a combination of the 2 antibodies (compared to none or very few in the controls), but it needs further comparison and the acknowledgement that there are many more children born to mothers without this antibody who also have an ASD diagnosis, and there are other factors that we also know to be involved in risk for ASD, such as genetic factors or other environmental or maternal and paternal factors.   Second, and most importantly, the samples they used were what is known as “retrospective”.  They took blood from mothers in a study for those who had already had at least one child with autism.  The samples were taken years after the diagnosis so the link between the autoantibodies and the actual cause of ASD is not a straight line.  The authors have said they are studying this in prospective samples, that is, women who have a child with autism and are pregnant with a 2nd or even 3rd.  This way they will be able to investigate the presence of the autoantibodies at the same time as the pregnancy and monitor the outcome of the child.  Some researchers have suggested that these autoantibodies reflect an ongoing immune process based on other risk factors like arthritis, gestational diabetes or other immune conditions.  More research using population-based and prospective samples would provide better information as to whether or not these autoantibodies are causal or secondary, or if it represents a subgroup with distinct features.

This story is a great example of how science has narrowed down an early hypothesis to an actual working theory through years of laborious research.  However, more work needs to be done, and if you have an immune condition or are concerned and have questions about an individual family and probability of having a child with ASD, talk to your doctor.  There are a lot factors that influence probability of a diagnosis, and more importantly, lots of factors that play out in real life, like genetic interaction, which we need to learn a whole lot about.  This algorithm did not take anything else into consideration, and when you are talking about family planning, you need to have all the information you can.  On the other hand, this research is meaningful for other reasons besides predicting the probability of an ASD outcome.  This furthers the idea that there are many ways to subgroup people with autism – both biological and behavioral – and finding those right combinations is really the holy grail of understanding ASD.

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
life
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.

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