Jessica’s Blog

Accommodations can go a long way for autistic people

A short video of me sitting at my desk on a bouncy yoga ball with my sensory lamp on while I wear noise canceling headphones

For Christmas, my husband bought me a desk because I really wanted my own space to be on my laptop. I didn’t like having to sit at the dining room table to do my work where there was too much noise and too much light. I couldn’t stand the clutter I was making there.

Now I feel so peaceful in our room with my own desk. I bought myself a yoga ball with a base to keep it from rolling away so I’m able to bounce and fidget freely. I bought myself a better quality noise canceling headphones and I really love it.

The room can stay dark or dim while my sensory lamp projects pretty colors on to the wall and I don’t have to hear noise from the kids playing. I find it’s much easier for me to focus while I work.

If you’re autistic or otherwise neurodivergent, please be kind to yourself and don’t be afraid to accommodate your sensory needs. It really can make a huge difference.

What it was like growing up autistic

For the first 11 years of my life, I went undiagnosed. The signs were there but no one knew much about autism back then. When I was 4 years old, my mom got married to a man who ended up abusing us both. I was abused for a lot of my autistic traits. I ended up having to mask my autistic traits from a very young age to keep myself safe but of course I just continued to be abused no matter what. When I was 10, I was taken away from my mom due to the abuse and I went to live with my grandma and uncle. My uncle is the one who had my legal custody since he spoke English. While staying with them, they kept bringing up my behaviors to the DYFS worker and then they ordered that I see a psychologist for an evaluation. At this point I was 11 years old and that’s when I received the diagnosis of autism and ADHD.

School was very hard on me because I never was able to fit in with the rest of the students. I was bullied for most of my school years. I was always seen as odd and weird and people hated me for being so different. I was very vulnerable because I was so trusting and wasn’t able to see the red flags at the time. I thought these people were my friends. But they would laugh at me and steal from me and I was always the last one to understand the “joke”. Eventually I was told “they’re not laughing with you, they’re laughing at you.” That’s when I realized I was the joke and it really hurt my self esteem. I’ve had several suicide attempts but yet I’m still here so obviously there must be a reason for my existence.

I’ve always felt misunderstood. Growing up, I didn’t know much about autism either, so it was very hard living life without even fully understanding who I am and why I do the things I do. I would’ve never even known about the diagnosis if I wasn’t snooping through all paperwork that my uncle had piled up in a folder. And even after the diagnosis, no one really tried to help accommodate my needs or even try to understand what my needs were. My family saw my suicide attempts as a manipulative tactic. Everyone thought I was an attention seeker.

I tried so hard to live up to everyone’s high expectations but it was never good enough. Everything I did and said was wrong. Everything was considered bad behavior and being defiant but no one cared enough to get to the root of the problem. I was communicating but no one wanted to listen.

It wasn’t until my early 20s when I started doing more research about my diagnosis and really started to understand it. And it’s all because I felt like I was regressing and then spoke to my psychiatrist about what I was experiencing and feeling. She helped me understand that I was just going through autistic burnout. That’s when I came to the realization that I owed it to myself to start doing the things that wasn’t done for me as a child. I slowly started to accommodate my own needs. I still feel burned out but it’s a little easier to manage when I can fulfill my sensory needs.

Reasons Why You Shouldn’t Support Autism Speaks

Autism Speaks is one of the largest autism organizations out there. Anytime you search autism in your search engines, you’re guaranteed to see something from Autism Speaks pop up too.

The autistic community doesn’t like Autism Speaks because we consider it a hate group. Let me explain why…..

They had a commercial years ago and it made it seem like autism is a scary thing and that your life is over if you have an autistic child. There was nothing positive about it. If you want to watch that commercial, here’s the link.

https://youtu.be/9UgLnWJFGHQ

The way Autism Speaks spread awareness is by using fear tactics. Also, less than 4% of the donations they receive actually goes to autistic families. The rest goes toward lobbying, advertising and research on finding cures for autism and prenatal testing similar to Down syndrome to prevent autistic children from being born. It’s disgusting!

Autism is not a disease that needs to be cured. It’s literally the way our brains were wired. You can’t separate autism from the person.

They say things like “autism epidemic “ as if it’s a bad thing. It’s not that there’s a sudden rise. The fact is, because we know a lot more about autism now than before, it’s now easier to detect and get a diagnosis for. Things changed for the better for the autistic community and they want to call it an epidemic. This “epidemic” will literally drop suicide rates within the autistic community because it’s a huge relief finally knowing why you have struggled all your life. It’s so hard living life undiagnosed or with very limited information about the make up of your entire brain. But now they want to push for cures and that’s very ableist. How do we embrace and love ourselves when the world is hating our existence just because we’re different? Make it make sense….

And if you really want to see an ugly video that was sponsored by Autism Speaks, here’s another one for you.

https://youtu.be/O0vCz2KWMM0

One mother clearly states she wanted to drive off the George Washington Bridge with her autistic daughter but that the only reason she didn’t was because of her other child. It’s really sad and makes me so sick to my stomach.

If you really want to help autistic people, don’t donate to Autism Speaks. You’re better off finding an actually autistic person and donating to them personally. It’ll make a much bigger difference. Autism Speaks does not speak for autistic people. They speak against us!

Why Autism Awareness Month is Triggering for Autistic People

April is autism awareness month. You may not believe this, but that whole month is very triggering for autistic people. So I bet you’re wondering why is a month that’s supposed to be dedicated to autistic people so upsetting to actually autistic people? It’s because autism awareness was not started by autistic people. It was started by non autistic people. This awareness that they try to spread is actually very harmful to the autistic community and does nothing but have more people whining about our existence and wanting cures for autism. I think by now everyone is aware autistic people exist. But the one thing autistic people need is acceptance but that’s also the hardest thing to get from people, especially from people who don’t understand autism.

You’ll see puzzle pieces floating around all over the internet and that’s also triggering for us, but I’ll go into details about that in another blog post.

You’ll see a lot of people donating to organizations that don’t even care about autistic people like Autism Speaks, but again, that’s for another blog post as well.

The month of April, everyone wants to speak over autistic people and push us to the side. We don’t feel safe to be on social media during this time because people make us feel like we don’t have a voice or that it doesn’t really matter.

If you’re going to be sharing anything about autism during autism awareness month, then I highly suggest sharing stuff from actually autistic people. Help uplift our voices. If it’s not by an autistic person, then you’re most likely spreading misinformation that’s harmful. Please listen to us when we speak because what we have to say does matter.

Autism & Seizures

Last week I missed my therapy session because I wasn’t feeling well and ended up having 4 seizures. My mom called 911 and I was taken to the hospital for observation and then was discharged.

The next day I felt my whole body aching and I was so weak, which is normal after having that many seizures. It’s very unfortunate because I was on a good streak where I was very productive for about 3 days in a row and then those seizures had me down for a day. Another thing I wanted to bring up is that I was also semi verbal after those seizures and my tolerance for sensory input went down drastically. It really sucked.

It is very common for autistic people to also have a seizure disorder but not all autistic people do. Although I don’t thunk my seizures are linked to my autism. I was born autistic but I didn’t start having seizures until I was 14 years old. I went through a lot of trauma and abuse as a child so I think that’s what started the seizures but I can’t really know for sure.

Hopefully next week I can post a more uplifting and positive blog for y’all to read but I figured I should let y’all know what’s been going on. I don’t want to break my streak of posting weekly.

Multitasking Fail

Picture of me working on digital art on my iPad with my daughter sitting on a Blues Clues pillow on my lap

I try my best to multitask but it’s usually a fail. I impulsively started working on a autism children’s book. I won’t go into the details because it’s an original idea and it’s not yet published. I don’t want anyone to take my idea before I get the chance to publish this.

I’ve decided to do the illustrations myself as well using an app on my iPad. My daughter has been wanting to stay glued to me all day. She started fussing because she wanted her blues clues pillow on my lap and then proceeded to climb up to lay on the pillow on my lap. I tried my best to work with her on my lap but I couldn’t really focus and kept messing up the illustration. I already struggle with hand tremors so things like this requires my full attention. So I guess I’ll just wait until she goes to sleep to continue.

I don’t know when this book will be finished or when it’ll be published. My autism poetry book is top priority right now but I’m working on the children’s book little by little just so I don’t feel so far behind on any of the books. After finishing and releasing my autism documentary, it’s given me a lot more time to focus on these books. I have so many ideas flowing in my brain and can’t wait to get everything sorted out and finished.

My day went downhill quick today

My son was ordered to quarantine due to being a close contact to someone who had COVID. That transition is hard enough. I got out of bed this morning and got him started with his virtual learning. Everything was running smooth until his second schedule. I lost track of time because of other things I needed to get done and logged him in 10 minutes late. Everything seemed to go downhill from there. I had an important 11am virtual meeting but I completely forgot and ended up being 10 minutes late for that too. They called me and asked if I was still logging in and I said yes but then I couldn’t find the link so I called back and we just did the session through the phone. I had to answer a bunch of questions all while my son is trying to ask me questions so I had to keep making this lady repeat herself. Then I get a phone call from my case manager which I couldn’t answer because I was still busy with the meeting. When the meeting was over, I tried calling my case manager back but she didn’t answer so I left a voicemail. I had to sign and email back this document to the lady I had the phone session with as well all while my daughter is crying and whining for a boob because she’s still breastfed. At some point I cleaned the litter boxes out and also was dealing with my sons attitude because something wasn’t going his way. Then my husband messages me and asks if our son started with Occupational Therapy yet but I didn’t recall him telling me about that so he ended up being logged in 5 minutes late for that. Now I’m left with a bad sensory headache and it’s only 12:30pm. I feel like the whole entire day is trash and now I’m sitting here working on this blog post for y’all to show you just how quick things can go downhill for a autistic person when there’s a slight change or inconsistency in schedule. It’s very hard for me. If you know someone who is autistic and you see them frustrated, please be patient with them.

How you can help autistic people this Christmas

It’s that time of year where everyone is in the Christmas spirit. There’s many autistic people who love the holidays but find it really hard to navigate through it because there’s not enough accommodations in place and too much high expectations placed on us by neurotypical people.

Here’s some things to remember that will help autistic people during the holidays. Keep our sensory needs in mind. Sensory overload is a very real thing autistic people struggle with. We may choose to hide away in a room to decrease the amount of sensory input if we feel overstimulated. Trying to read all the social cues and trying to keep up with all the back and fourth conversations and everyone touching us is a lot for our brains to process. Try to keep noise levels down if the autistic person has auditory sensitivities. If the autistic person is sensitive to bright lights, try to keep the lights dim and close all curtains that have bright sunlight beaming through. If the autistic person is sensitive to touch, please make sure to ask before giving hugs or making any kind of physical contact. That should go without saying but I figured I’d say it anyway. Consent is everything and you should respect any boundaries we set in place.

Another thing to keep in mind is our routine that we may have. The holidays doesn’t change our routine so if we run off to do whatever it is that needs to get done, please don’t make a big deal about it. Sticking to routine helps the day go by smoothly.

Also, try to remember that we have special interests we may like to info dump about. Please don’t make us feel like we’re killing the holiday spirit if we choose to info dump. For me personally, it’s so much easier to connect and have conversations with people when it revolves around my special interests. If you want us to engage with you, go at our pace.

I also have a suggestion that may help autistic children who don’t seem interested in opening up Christmas gifts as parents expect them to. Try to make it more appealing for them. Maybe they need a more detailed visual which means maybe you shouldn’t have the gifts wrapped. I know many people want to stick to the traditions of wrapping it but it’s only fair to be accommodating to the ones who need it. If you insist on wrapping, maybe try wrapping it in clear cellophane so they can still see what it is and they might be more interested in opening it up. Also, try to gauge what their special interests are and get gifts that are related to that. Also, please don’t pressure them. Pressure can trigger a meltdown or shutdown. Be more understanding and have more compassion.

One important point I want to bring up is for a lot of autistic people, it’s very hard for us to identify our own emotions and some of us have a hard time seeing the first signs of sensory overload. It’s also sometimes hard for us to verbalize our needs even when we know what it is because speaking can also be overstimulating, so we may shut down.

If you plan on inviting an autistic person to your house for the holidays, I feel it’s a good idea to ask them what their food preferences are so they don’t feel left out when everyone is eating but it happens to be a food they’re sensitive to. This ties into our sensory needs.

I really hope these tips will help a lot of you out there to accommodate autistic people this holiday season. Please be patient and understanding and most importantly, please be inclusive. Don’t choose to not include or invite us just because you think we may be too needy. We deserve acceptance! We don’t want to be ignored, we just want to be accommodated.

Seeing the world through my autistic eyes by Jessica Jenkins | Autism Documentary

I’m really excited to announce that my autism documentary is now released. I really was hoping to have it released this morning but it was taking forever to export and upload it so I had to find ways around that and I didn’t want to wait until next Wednesday to post this because I’m very impatient.

I’ve worked really hard on this and I really hope that whoever watches it enjoys it and continues to support me and uplift mine and other autistic people’s voices.

The documentary is free access to the public but if you would like to make a donation to help support me, that would be greatly appreciated. The only thing I do ask for is that you share my documentary with your friends and family to help it reach more people. Also, please subscribe to my Youtube channel if you haven’t already.

One-Time
Monthly
Yearly

Make a one-time donation

Make a monthly donation

Make a yearly donation

Choose an amount

$5.00
$15.00
$100.00
$5.00
$15.00
$100.00
$5.00
$15.00
$100.00

Or enter a custom amount

$

Your contribution is appreciated.

Your contribution is appreciated.

Your contribution is appreciated.

DonateDonate monthlyDonate yearly

Autism | A reminder that we are gifts… not burdens

Picture of me wearing a handmade bow and lying under our Christmas tree that’s lit up

Everyone is diving deep into the holiday spirit now but for a lot of autistic people, the holidays can be stressful for us to process. Between all the noise and lights and family gatherings, it can all be overstimulating. A lot of autistic people, including myself, sometimes feel like our needs during this time of year causes way too much inconvenience to the people around us and some of us may find ourselves feeling shame when having to ask for our needs to be accommodated during a time where everyone is expected to be having a good time. A lot of us mask our autism heavily during this time in fear of people seeing us as burdens and annoying. We don’t want to be seen as the party poopers.

This blog post is to remind myself and the rest of the autistic community that we are not burdens just because we have specific needs. This Christmas I want you to know that you’re a gift, you are valid and I see your needs and I want you to freely express them with no fear. Don’t force yourself to tolerate anything unpleasant for the sake of others. Do as I did in the picture above and place a bow on your head and get under that Christmas tree because you are the most precious gift. We’re able to see the world in ways neurotypical people cannot and that’s what makes us special. Being different is so beautiful and I want you to embrace your quirks.

I hope this blog post was able to reach whoever needed to read this. I hope it uplifted you in any way and I want you all to know that you’re not alone.