This Special Life

Autism Advocacy & Support

Chesley Maldonado

Love on the Spectrum

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Near the end of July this year, Netflix release an original series called “Love on the Spectrum.” The program follows a number of men and women on the autism spectrum in romantic situations. Many of them have struggled to find love, while a few of them have been able to really connect with someone else. There aren’t any eliminations, and they don’t try to have one person date a bunch of other people in order to pick one (like the Bachelor). While the show isn’t perfect, it can help more people understand some of the difficulties that autistics face romantically, and some of those challenges are just like the average person’s challenges.

The show reveals that people with autism do desire romantic connection with people, and they are quite capable of forming and keeping deep meaningful relationships. Depending on where they are on the spectrum, they might need more assistance with the social conventions of dating. This is where relationship expert Jody Rodgers appears on the show to help certain individuals develop the social skills necessary to begin and develop new relationships with others. Her methods are criticized for sometimes attempting to create typical behaviors and gestures that are just formalities, such as holding out a chair for someone. Conversation skills, eye contact, and body language are all practiced, but as one reviewer points out, the typical gestures may not make much of a difference dating someone else on the spectrum. It does seem to be, however, helpful for some of the people to at least help them begin to relate to their dates and attempt to connect.

The show focuses on matching autistics with other autistics. It would be interesting to see an average person relating on a romantic level with a person on the spectrum, without actually being on the spectrum themselves. There is a sort of autistic bubble created that is fairly unrealistic.

The truth is that dating can be hard for most people, on the spectrum or not. Finding things in common, being physically attracted to one another, and having the same goals and values are all part of searching for a good relationship. Struggling with loneliness and wanting to find that someone special is something that people who have autism deal with, just like everyone else. What is great about the show, is that they are so honest about what they want and if they want to move forward with dating a person or not. There is no pretense about how they feel or what they really want, and they don’t try to pretend to be someone that they are not in order to impress anyone. That is one of the most refreshing aspects of watching this show, and it raises the question of whether or not typical people have dating all wrong. The average person is not comfortable enough in their own skin to just be themselves and tell the truth to the face of a person they are dating if they aren’t what they are looking for. The autistic people on this show do not have that complication. 

Overall, it is a fun watch, and many scenes are somewhat endearing. It is a window into that world, but is by no means conclusive or representative of the entire autism spectrum, or of ethnicity, age or orientation. Love on the Spectrum is very entertaining. There are humorous moments when the honest, straightforward comments of some of the autistics on the show truly make others laugh. It is fascinating to watch how they relate to their families and then how they act on their dates. There is a lot of love and support on the show from family, and seemingly from behind the scenes. It is definitely worth the watch.

Kayla Smith: Autistic Activist with an Attitude

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Twenty-two year old Kayla Smith is an African American Autistic Activist that has been speaking up for the rights of disabled people for a few years. She has popular following on Twitter, and she is fighting for equal rights and more accurate representation for all people, especially autistics.

She was recently interviewed by In the Know, and featured on Yahoo! News marking the 30th Anniversary of the Americans with Disabilities Act. She explained her journey thus far as a black autistic woman, which fits her into three categories that can use advocacy. She discussed her research into autism and how it has been diagnosed throughout the years. Smith saw problems with it, specifically how much longer it can take for people of color to receive a diagnosis of autism. It is her desire to see more representation of the wide variety of autistic people in the media. She notes that white males are shown more often than females or people of color. There is also a wide variety of abilities and behaviors that are not shown on television shows, movies, or the internet. 

A few years ago, when she first began to speak up, she engaged with #ActuallyAutistic. Smith doesn’t like the view that autism is something that needs to be “cured” or “fixed” and she wanted to help make a difference out there. Kayla Smith coined the hashtag #AutisticBlackPride which has truly gathered a following on Twitter @BeingKaylaSmith. Smith joined Twitter about five years ago, and didn’t know that she would become such a powerful voice for equal rights. She now has over 12,000 followers on the site. She describes herself as a “Young Black Autistic Disability Rights Advocate,” and has updated her name to read Kayla Smith for #BlackLivesMatter in light of the recent movement. She wants everyone to have equal rights, particularly those with disabilities. She wants people to listen and hear what others really have to say without getting offended.

In her interview with In The Know, she expressed how difficult it can be to have the responsibility to speak up on the issues in such a public way. Sharing her opinion has not always been met with acceptance, agreement or even courtesy. Sometimes she feels a little too much pressure from that, but she doesn’t allow it to stop her. She previously shared in an older interview with Medium that she had been bullied for her differences in school. There was even a time when she thought about suicide. Thankfully today, she has found love and acceptance in her family, and she is strong enough to speak up for others as well as herself. When she is not posting about the issues, she shares her everyday life with her followers. She works, goes to college, plays video games, and other things the average person does. It is important to her to share that not everyone labeled autistic is what has been shown in the general media. She wants everyone to have equal rights, particularly those with disabilities. She wants people to listen and hear what others really have to say without getting offended. Smith is an inspiration hoping to continue to inspire change.

How to Shop When Your Child Won’t Wear a Mask

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All over the country, many popular stores now require face masks for employees and customers. Big brand companies including Walmart, Apple, Best Buy, Whole Foods and several others won’t let people inside without face coverings. This means a lot of difficulty for parents of autistic children who can’t wear a mask for a long time or will not put on a mask at all. Care takers of special needs children who have sensory issues may have to try alternatives to masks and/or in-person shopping altogether. Thankfully, there are some options available.

Mask Alternatives

Traditional masks might be too difficult for a child with sensory issues to get used to. Bothersome ear loops, scratchy textures, and breathing anxieties might be fixed with alternative face covering.

Face shields. These clear face coverings don’t have any earloops, don’t fog up glasses, and don’t come in direct contact with the face. These are usually attached by some sort of hat or headband, and may be more comfortable than a mask for your special needs child. Beware, however, that they will still have to maintain social distancing as the shield will not protect your child or others as well as an actual mask can.

Scarves. There are scarves becoming available on Etsy that can also be used as face masks. Several models do not have any ear loops, and you can find them in a wide selection of styles. They are easier to put on and take off, and won’t tug at the ears. This option can protect the face as much as the average cloth mask will.

Instead of In-Person Shopping

Consider finding other ways to get what you need without leaving home, or without entering the store, when possible. You may not always have this choice, but take advantage of it when you do. Check the websites for information such as curb-side or in-store pickup if you do not want delivery.

Have it delivered. Order as much as you can online. Many restaurants, retailers, and grocery stores often have delivery options that you can access online. You won’t have to leave the house, your can stay with your child mask-free, and save yourself from stress.

Curb-side pick-up. Alternatively, sometimes you need things right away, and in that case you may be able to do a curb-side pick-up. Place your order online, pay online, and drive to the location at the given time. When you get there, an employee will come out and get your information. They will then come out with your order. You won’t have to force a covering on your child, since you won’t need to go into the store. Just keep your child at about 6 feet away from others.

Pick-up In-store. Sadly, not every store will bring your items out, and you will still have to go inside. It is still a great option to pay online and have everything set aside for you. This will reduce the amount of time that you need to be inside, and reduce the amount of time your child will have to cover his or her face. 

Stand Up For Your Rights

Be aware that under the Americans with Disabilities Act (ADA), business may have to make reasonable accommodations for your child.  This may require that you call ahead to request a curb-side pick-up at a store that does not normally offer it. Do your best to follow guidelines, but also know your rights. Do not fall for false claims that state the ADA exempts people with disabilities from wearing masks in public. Public safety comes first under the law. Business can and should, however help under special circumstances.

Top Tips for Helping Special Needs Children Cope With Masks

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The coronavirus pandemic has created a number of additional challenges for the parents of children with autism or other special needs. The new mandates across the United States requiring everyone over the age of two to wear masks in public settings can be uncomfortable at best and triggering at the worst for those with sensory issues and/or difficulty adjusting to changes in routine. Autistic children in particular can feel overwhelmed with anxiety about breathing or seeing other in masks, or uncomfortable with the feeling of the masks on their mouth, nose or ears. There are ways to help.

What Can Parents and Caretakers Do to Help?

You can take a few steps to reduce the stress and discomfort that comes with mask wearing. To begin, talking with your child about it can help. The next thing that you can do is allow them to get familiar with masks. After that, have a trial run with different types of masks to find the most comfortable fit. Problem solve as necessary, and incorporate wearing masks into the regular routine. Here is a closer look at each step.

  1. Talk about it. Explain why it is important to keep themselves and others protected during this pandemic. Using a social story can help children see it in a positive light, and can help them to accept it as something others around them will also be doing. Using more than one social story or an activity can also help make the point and explain expectations. You can also demonstrate using their favorite toys and model wearing a mask yourself. Be honest about the discomforts, so that they don’t feel alone in disliking having to wear them. Let them know that it is worth it to you to keep everyone safe. Autism New Jersey has a number of helpful links to help parents communicate and help kids cope with masks.
  2. Let them get to know masks. Allow your child to touch and hold a mask with their hands. Gradually have them touch the mask to their face and then try wearing it, even if only for a minute at first. Show them how to properly put on and remove them. Considering doing this with a few different kids’ masks and increasing the amount of time wear very gradually. 
  3. Go out for a test. Pick a location that is not crowded and does not have a lot of noise, lights or other potential triggers. Wear masks and see how it goes for a short period of time, such as 15 minutes. If you need to make a change in the size, type or texture of the mask, do so for added comfort.
  4. Add it to the routine. If you have a visual schedule add a picture of a mask before going out. Try to normalize it as much as possible, and incorporate it into any other type of dressing or packing activity you would normally do before leaving home. Even if you will be able to social distance and won’t need to use it, make it routine.

Problem Solving

Allow time for feedback. Let you child express to you, as best they can, about how they are dealing with masks. Make sure that they know you understand how they feel and be patient. Not every child will easily adapt, and it may take daily effort over a period of time. Avoid pressuring them or forcing the mask if they are truly against it after extended efforts.

Teach them how to properly wash their hands, and stay at home when possible. Be sure to cover social distancing. The Autism Educators website is offering a free download that covers social distancing.