Spotted around the web: Coronavirus, genetic mutations, obsessive-compulsive disorder

Research roundup

  • Preventing cell death during brain development in fruit flies allows diverse neuronal circuits to form. Science Advances
  • The most widely used autism screen is as reliable for black children as it is for white children. Journal of Autism and Developmental Disorders
  • Children whose autism is a result of copy number variants in their DNA tend to have severe traits. International Journal of Developmental Neuroscience
  • Ethnic and racial minorities cite fear and distrust as reasons they do not participate in clinical research. Trials
  • Strategies to increase employment for autistic people include providing early work experience, highlighting strengths and overcoming stigma. Autism Research
  • People are mostly willing to share their genetic information, especially if they are compensated and have control over any reuse. PLOS ONE
  • When faced with a frustrating task, autistic children may react with emotional outbursts; these tend to be bigger and last longer in those with minimal verbal and life skills. Autism

Science and society

  • Coronavirus has prevented people from visiting their autistic family members who live in residential treatment facilities. Jewish Telegraphic Agency
  • Design hacks to make homes sensory friendly for autistic children need not be expensive or complicated. The New York Times
  • The television show “Everything’s Gonna Be Okay,” available on the streaming platform Freeform, features LGBTQ characters who have autism. The Advocate
  • An autistic teenager shares her experiences and debunks misconceptions in short explainers on the video app TikTok. Yahoo Lifestyle
  • Autistic author Charlotte Amelia Poe says embracing her otherness was key to moving forward in her life. The Guardian
  • Because of the coronavirus, telehealth services may be expanded for people insured by Medicare, the national health plan for older people in the United States. STAT

Autism and the arts

  • A Colorado orchestra and ballet company has won funding to create works that are appropriate for children who have autism or sensory sensitivities. The Gazette

Originally published on Spectrum

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Preparing for Possible Isolation

This was adapted from a post on a Facebook group and includes my response to which I felt was necessary in a time of pandemic.

Dustin

I come from we Aspies (we little professors) were considered role models in our classrooms, and were quite scholarly, and also obedient at home, in school, in church and in public.

So I’m wondering how these people are going to manage, now that stores are running out of their favorite foods, and now that we are having curfews and quarantines. In other words, how will autistics who haven’t bothered to adapt going to deal with all this change?

-If an autistic elopes and breaks quarantine during a curfew or quarantine, what do you suppose will happen?

-And if your autistic tries to lecture a police officer who is trying to maintain peace and order, what do you think will happen?

-And if your autistic has a meltdown in public because his chicken nuggets are out of stock, what do you suppose will happen?

-And if a parent of an autistic is in dire need of medical assistance, what do you suppose will happen?

I really, REALLY want to know if you all are faring well, Do you think your lives will IMPROVE during the spread of this virus as the result of your stubborn refusal to take action in the areas I have mentioned, or do you think things will get worse?

A bunch of mostly unemployed, not romantically involved adult autistics who are living with their parents, or on government benefits.

So answer me this: If you know how to make your lives better, then why aren’t you making your lives better? There can be only two answers: Either you are lying when you say you know how to make your lives better, or you are just lazy. Neither is an acceptable attitude to have when people are fighting each others in stores over a single roll of toilet paper.

Do any of you really think anyone is going to put up with your tantrums and meltdowns now? Do you really think that these people are going to make exceptions for you when these neurotypicals won’t make exceptions for each other?

Wise up. Grow up. It’s the only way we’re all going to get through this crisis.

I’m in my 30s at the Genesis of Asperger’s, I had maybe one accommodation in public school because my parents fought tooth and nail for it. By my Junior year on my own I elected to fill into the mainstream of a high school of nearly 1,500. It can be done. I went to training school and was nearly self sufficient without accomodations. Later I went to community college, again without accomodations and while working part time and other necessitated duties.

Yes, I do have that same old job but if I didn’t love it, I wouldn’t be there and I get paid well to do it. I had other issues six weeks ago that necessitated me to move in with my parents until I get resituated.

I have seen it in action throughout the week in person autistics that have meltdowns because events are being cancelled. I used be that person until I learned the skills to become a adult. Yesterday, I got a call from my employer stating not to return to work for the time being after just being cleared to return (today was going to be my first day back) until this whole pandemic clears due to my employment being non-essential.

I have been a firm autism advocate all my life and even have a blog on it. However, my parents who I love graciously show me tough love . While staying with them I eat what they have and what is available.

No one likes to be told to stay isolated, but for the safety of our world it’s the best thing right now. Here we haven’t been told to do so but the signs are there. The local utilities ensured we would be connected throughout the outbreak. Technology is grateful. I have a lot of ideas when I likely have to be isolated. I got some books, movies, plan to author some. You have to be creative. You have to remain calm and listen to authories. My dad said it well today that we could be at war and be forced to do things. So be thankful. I communicated with my mentors about being frustrated about not being able to go back to work. They said they think God is telling me to take time for me and in my 34 years of living I have never done so. Everything happens for a reason.

I do understand that individuals have needs and it will be difficult for parents in the days ahead it will be difficult but it is a crucial time to gain the skill set because I’ve read where individuals are having difficulty, so brace yourself because I know it can be done and it isn’t easy but it makes a smoother family unit. Yes, there are individuals that will experience difficult items but this will teach everyone to be better prepared.

The Uncertainties Ahead

Unless you live under a rock, or are on tribal lands, the media is laden with constant breaking news of the COVID-19 (Coronavirus) Outbreak. The outbreak started in the Wuhan Provence of China and has spread around the globe attacking most of the continents. For the past week, the states has been in fear with federal, state, tribal and local jurisdictions having citizens testing positive or presumptive positive for the virus.

There is no cure nor vaccine, only treatment that requires one to have limited contact and requiring self-isolation from others, something that hasn’t been commenced since WWII. In the past few days, while trying to not get too immersed in overload, as it is not healthy and trying to remain calm. It is increasingly difficult to do so as cases of the virus got closer and closer to the area. We are now seeing airplanes being screened, cruise ships with cases, among others.

This week has been a difficult week with the start of Daylight Savings Time, a week where the full moon is abound and closing the workweek with Friday the 13th. With that as surrounding states in addition to Pennsylvania made gradual closures, the ultimate decision was made to close all schools and libraries, among other commonwealth sites. My mother works at the local state transportation department and was directed by her superiors to use social distancing upon return.

My employer is supported by the county government and the governing body set a declaration Friday. I received a phone call from my supervisor to not return to work until further notice as I am classified non-essential and have no workload requiring deadlines. However, my job support program is open as of now, although they have cancelled all outside and public events until further notice, although I have a feeling before long we as will be my mom will be sent home.

As an individual on the spectrum, I have experienced burnout the last few days from the local stores I visited. I have seen bare shelves and checkout lines extended in each aisle from the front of the back of a grocery store with only two cashiers (and one elected to work past his shift.) My mother and I stood in that line in that store for 35 minutes and the local super center had more checkouts open than the holidays. If you or your child has struggles being in crowds, I would suggest if possible an online service. Wal-Mart Stores are closed at night in order to restock and sanitize, although we got a up front parking space. I did snap photographs of the shelves of where the bread and potatoes are to be. The only breads were Gluten Free (My Dad is a Celiac, woo hoo!) organic and flavored. I have never seen so many TP references or Beavis and Butt-Head clips this weekend than I did in 25 years.

Bread Aisle
Potato Bins

Social isolation and distancing is a difficult situation for those of the special needs community. Today, I came across an article in USA Today where an aide in a public school for special needs in Chicago contracted the virus, therefore requiring the 200 students and staff of the school to self-quarantine. A local legislator is delivering supplies to those households. Nonetheless, this is very strenuous on the caregivers, as some individuals have compromising health issues, not to mention the behavioral challenges they face. The article noted that an individual was becoming physically aggressive as a result of being contained in their home. One parent stated “You can’t Neflix all day.” Special needs students face a challenge of being educated remotely as well

Tonight I am thankful as I am writing this blog post that I have the ability to regulate my emotions. Last week, at my job support program, as I was reading the daily announcements and staff announced certain events would be cancelled, another individual slammed his hands down and screamed at me to “shut up.” Thankfuilly, staff redirected quickly without incident but It did shake me up bit because I was looking at a less mature version of me. Over the last month and a half I have had several changes including my work and living situation that have been rather difficult on not only myself, but my parents as well, since I am residing with them.

Today, when I received that phone call to not report to work, I was frustrated. However, when I reached out to one of my supports, they reminded me of how these events were God’s plan and that they felt that this was a way of God telling me that I needed more time off. There is a possibility that I will be paid for missed work, but as this national pandemic is evolving, I am uncertain as of yet if that will occur.

Yes, autistics thrive off of routines, and I know several that do. But growing up I have been continually been taught that the need for flexibility needs to be brought in as necessary. Autists have issues with this and the times ahead are uncertain, however these are a few tips from several sources, this one I adapted from today’s post on Autism Apples Kool Aid

  1. Always tell the truth! You aren’t protecting your child by lying – especially when they are hearing things from other people. You don’t need to share a lot of details – just say that you are staying home for a while to keep from getting sick. Use social stories if you need to.
  2. Be ready for questions and answer them simply. Tell them it’s like a bad cold and that you will be right there with them if they happen to get sick.
  3. Make the change in routine seem exciting! More time for favorite movies! Time to make crafts and read books. Time to play outside. More time for iPads, Legos and model trains. More time for Sesame Street and color by numbers. I know the change in routine will be tough if you need to quarantine – just take a deep breath and know everyone else is in the same boat.
  4. Explain why they have to wash their hands so often – and make a game out of washing them. Let them make bubbles and squish them. Sing goofy songs to make sure they are washing their hands long enough. (I made Casey and Rob use hand sanitizer after we left stores yesterday and to wash their hands as soon as they got home. They thought I was nuts.  )
  5. Assure them that you have taken precautions and have enough food. (I’ve heard some crazy stories – I’m sure my kids have, too.) Lay those fears to rest. Share everything you have done to keep them safe. Again, even if your child can’t talk, they are hearing and they may be scared. Talk to them!
  6. Don’t let your kids see your stress. Easier said than done, I know, but if they see you are scared, it will scare them more.

In closing, take time to enjoy each other. You may struggle, but thank goodness for technological advancements! Embrace this time to show love for one another and count your blessings!

We will overcome!

Spotted around the web: Sleep problems, social comfort, police training

Research roundup

  • Suicidal behavior may be rooted in people feeling burdened by and excluded from society, both of which are heightened in those with autism. Journal of Autism and Developmental Disorders
  • Sleep problems in autism persist into at least middle age. Autism in Adulthood
  • Autistic people tend to feel most comfortable when they are around others on the spectrum. Autism
  • Children and adults with autism can count their heartbeats — a skill related to processing emotions — as accurately as typical people can, but they display different brain activity during the task. Autism Research
  • A family-based cognitive behavioral therapy may ease anxiety in autistic preschoolers. Journal of Autism and Developmental Disorders
  • Vaccine exemptions for philosophical reasons, as opposed to medical or religious reasons, doubled in Texas between 2012 and 2018, and were concentrated in metropolitan areas. PLOS Medicine
  • Parents of children with intellectual disability have increased odds of mental health problems. The British Journal of Psychiatry

Science and society

  • Some families introduce their autistic children to local police and educate officers on atypical behaviors, such as easily misinterpreted responses to commands. The New York Times
  • A New York state legislator offers suggestions for families to inform and prepare their autistic children for the coronavirus pandemic. Times Union
  • New York state has approved street signs alerting motorists that a child with autism lives nearby. The Buffalo News
  • Two autistic writers share advice they would give their younger selves about fitting into a typical world. Psychology Today
  • The perceived social difficulties of people with autism have more to do with perception than reality. Scientific American
  • The shoe company Vans has released a new line of cushioned slip-on shoes designed for children with autism. CNN

Autism and the arts

  • Autistic artist Julius Trees Parrish is showing his abstract paintings at a gallery in Viroqua, Wisconsin. Vernon County Broadcaster
  • A documentary about an autistic teenager from Iceland who built the world’s largest Lego model of the Titanic premiered this week in Tennessee, near the museum that holds the model. WVLT
  • An artists market and coffee shop outside Detroit, Michigan, trains and hires people with autism and sells their art. Metromode

Originally published on Spectrum

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Portrayal, Have we got to what dating in autism REALLY is?

Note, this article contains a spoiler from this weeks episode of The Good Doctor. While I have made commentary about media portrayals in the past, I felt this was necessary because of the relationship factors autistic people face.

Dustin

Last night, I shared a story on The Mighty regarding a review of a Love scene by Dr. Kerry Magro, a speaker on Autism who is on the spectrum himself. In summary, Shaun’s girlfriend states that their relationship will never work. He asks is it because of his autism, she cannot come to herself to an answer. I have embedded a scene below for your viewing pleasure.

Even though Lea (his girlfriend) is entitled to her reaction if she felt she was being pushed by Shaun, to me, her explanation — “You are autistic. You can’t fix that” — came off harshly. There are people in the world, like myself, who are on the autism spectrum and are not organized like Shaun is. If you’ve met one person with autism, you’ve met one person with autism. A diagnosis should not be the reason someone says no to a person for a date. There should be specific reasons why someone says no whether it be organization, no spark, etc.

Dr. Magro is worried that some of the people he mentors will believe they’ll have fewer dating opportunities because of this scene. Additionally, he worries they’ll believe any potential partner might steer away from them because they are on the spectrum. As a community, we should be advocating for finding the right person when it comes to dating. It’s possible to find someone who accepts you just as you are.

With that being said, I must stress that we as advocates for whoever we may be advocating for must be tolerant, accepting of who one on the spectrum wishes to be partnered with. I myself dislike the simple fact that film and TV portray relationships as solely heterosexual. There is a plethora of knowledge that is proven in the online world that this is simply not true.

Mainstream media has a generalization portrayal of what a relationship in not only the autism community, but the overall disability community that it is of the standard nature. I do understand that several are in denial about this fact, however in my opinion, you will never know what that person identifies as unless you have that serious conversation.

That conversation may be difficult and cumbersome to have, but relationships are as well. They are not easy for the general populace to start, let alone one with other factors such as a physical, cognitive, mental, intellectual disability. If we truly care about what an individual wants to have the perfect relationship, if they say what they feel (even though it may be diffucult to accept) we must be willing to accept it and assure that the persons have the tools at their disposal to become successful in what they identify as.

Also as those in the autism community must first and foremost in any relationship make aware what consent is to the autistic person and try in their terms to make sure they comprehend that it is very important to know what they are able to know the power of it.

Many say to a person that they are entitled to be who they want to be, but we as advocates and those who love them must be willing to accept the fact that that may not be either what we want it to be or what it is is not normal. A autistic person wants to be happy, just like you and not have hard feelings because it is not wrong. An person on the autism spectrum has a whole other set of issues, they just want to have some sort of happiness in their life, don’t let them down

The Grocery Store, Part II

A few weeks ago, I wrote about our local grocer closing their large store, and dividing that load between two smaller stores. It has been over a month since then, yet I cannot get to the moment of what is normal and adapt to the new digs.

After the store closed, the store moved its consumer operations to a smaller neighborhood market that has been in existence in my neighborhood for over a decade. I as well as observant community members knew this was happening, as their management decided to close their larger store while witholding notice and only posting on social media downright truths in a roundabout way what those truths were, but encouraging evolving business.

In those six weeks since that post, I have given grace to the store for accepting the growing pains of a move, but I have realized that it’s difficult to do something that has become normal for a decade and a half in what one of my parents call a small claustrophobic environment. Yes there has been changes, but I miss the wide aisles, the signs above and the variety of what was available. I do appreciate their prices as I have for all my life, but at what cost of my mental health and neurological conditions must I endure to save money.

For example, last night, our family had ordered pizza, and I wanted to get some milk and other things on the way to pick up the pizza. I had stopped at the store to grab a few things to discover there was only one checkout open and the cashier who is overly friendly had a customer with a cart full of groceries and was not very fast, sometimes stopping to converse with the customer, before proceeding with the order. I as well as another gentleman in the store attempted to be patient. However, I could tell it was going to be one of those things that would make me really angry. Therefore I put my purchases back, mumbling a few swear words and exiting the store without purchasing anything. Out of the corner of my eye, I could see the gentleman with the soda doing the same thing.

The next day a spouted out at one of my parents about my dislikes of the store and who they chose to retain and who was furloughed as part of this process. They shared my frustration but reminded me to be accommodating, because we had the assumption that they were legally protected employees. Additionally, she reminded me that another store was close by should I want to go there and she would also assist me in my grocery shopping needs.

I do like their online ordering service, and the delivery folks both on site and in person are super friendly. I had seen in a local paper I read that delivery is free with a $100 order, so I will be taking advantage of that more often and going to the other stores for in between things, just for a large order it is difficult because there is no order rhyme or reason of where things in the store are, and others in my family feel that way as I do. Today, we went together and couldn’t even shop there because we felt so anxious, we walked out, being so disgusted and sad.

We do support the business in other ways, however because of the confined environment, it is increasingly difficult to shop in a comfortable manner.

The Changing of the Clock

As a child, I never struggled with Daylight Savings time, because I either prepared for it by my family, or I just never noticed it. Nonetheless, in recent years, it has been harder and harder to overcome the change, yet I look forward to the time change in the spring, as it brings forward a sense of the mood eventually getting better.

For years growing up the Daylight Savings time began on the First Weekend in April and ended the last weekend in April. This occured during my youth, and it occuring on the weekend, hardly had any issue that I can easily recall, other than being up late.

By the Energy Policy Act of 2005, daylight saving time (DST) was extended in the United States beginning in 2007. As from that year, DST begins on the second Sunday of March and ends on the first Sunday of November. In years when April 1 falls on Monday through Wednesday, these changes result in a DST period that is five weeks longer; in all other years the DST period is instead four weeks longer.

This has been a struggle, as has been many in the autism community. Growing up, I have had the pleasure of visiting the Amish community in the adjoining county, and they elect not to observe daylight savings time, this confused me, but being mostly in our own car, and this was a house-by-house basis, it didnt seem as hard. One trip I made with my dad and his friend to a horse sale during Hurricane Ivan in 2004 did confuse me as it was in the State of Indiana, and at that time not all counties did not observe daylight savings time, and the county we were in did not because of the Amish population. I did not sleep well, and it was a misreable trip as a result. The following year the Indiana legisalture absolved this practice, and now the States of Hawaii and some parts of Arizona are the remaining two that follow this practice.

I have heard of legislation of Pennsylvania and other adjoining states such as Ohio and others attempting to abolish this practice. I would be happy if this were to occur. I personally feel that I suffer greatly from Seasonal Affective Disorder (SAD) due to the simple fact that I struggle emotionally during the standard months of missing daylight and the time changes. In the past few weeks I have been elated to be heading out to work in the daylight to not only have the clocks changed and yet again starting my day in darkness.

As I do look forward to the time changes as our local library has a book sale and a soup/chili walk. I do struggle after the change as I lack sleep in the fall and get too much in the spring. In the course of the past 24 hours, I have slept 13 of them, and now I do not feel like sleeping but I will do give it a college try. The thought processes running through my head make it difficult, but with medication, I am able to catch some sleep but oftentimes not enough.

All in all, I appreciate that extra hour in the fall, but the SAD symptoms do kill me so because I cant get out as much as I like during the week. By the time I get home from work I often in the colder months have less than a few hours to do something out of doors, or go somewhere on my own. The weather in winter, while better isnt all that warm although the weather is looking to be better with the appearance of birds this week.

I do like the spring change because of the things restarting, the ability to go walking, longer days, the tourist season of the mountains, and so forth. I just don’t like missing out by continious sleeping for hours on end to catch up.