Neurodivergent Adult's Unnamed Newsletter Issue 1, February 12 2024

Hello and welcome to the first issue of the as yet unnamed neurodivergent newsletter by The Neurodivergent Adult! I’ve been writing online for more than a decade now and after taking a year off of writing completely I decided it was time to get back into the saddle, which is when I came up with the idea of a weekly (yes WEEKLY) newsletter about neurodiversity written by someone who actually lives it.

In case you aren’t familiar with me already, The Neurodivergent Adult is run by a woman with ADHD who is married to an autistic man. This first issue is a little bit on the long side, for which I am very sorry to all my ADHD readers. But, I hope that you will find the information contained within it to be both educational and entertaining.

You can help keep The Neurodivergent Adult going by becoming a Patron at patreon.com/NeurodivergentAdult

Global ADHD Medication Shortages

As the ADHD medication shortage continues on in yet another year tempers are getting short, Hollywood actors are being forced to leave their jobs, and there seems to be no end in sight. The creators of ADHD medications are quick to point fingers at the FDA and blame them for quotas on what is a restricted class of drugs. But, the FDA fired back saying quite matter of factly that NONE of the ADHD medication producers have come close to hitting the limits set for them. It also ignores the fact that the ADHD medication shortage isn’t just happening in the United States. In fact, there are stories of shortages from all over the world. This truly is a global shortage. 

But the big question is…why?

The answers that have been given are…unsatisfying at the very least. The answer that most people seem to come to is that supply simply can’t keep up with demand. During the pandemic, as people got the opportunity to do more self-reflection more and more people were diagnosed with ADHD, a process that is itself no easy feat no matter what country you live in. More diagnoses means more people looking for those medications, which means that unless the creators start making more there isn’t enough for everyone. 

If that were the case then a shortage would be understandable for a short time while these companies ramp up production. Maybe a few of them even need to have new buildings constructed. But these shortages started in 2022.

Now, I don’t want to sound like a conspiracy theorist, but you do have to start asking questions. Why is this shortage still going on? While there have been some suggestions that the shortages will end in April 2024…we haven’t actually seen any evidence that this is going to happen and even if it did it wouldn’t be an overnight process. There are nearly 8 million people in the United States alone who are diagnosed with ADHD. Assuming every diagnosed person is taking 1 pill a day that is 240 million pills in just one month. 

There doesn’t seem to be much evidence that we’re in the middle of this slow ramping up now either. Sure, you might see a few people in your local ADHD Facebook groups celebrating the fact that they were able to get their prescription filled this month, they are still a rarity. The majority of people are still having to face the world without their ADHD medication.

Right now it looks like the shortage is going to get worse before it gets better. More diagnoses means more people seeking medication. So, what is the official advice for people who can’t get the medication they so desperately need?

Get good sleep

Try meditation

Drink caffeine, in moderation

These are great tips and all…and clearly written by someone who has no experience with actually living with ADHD. 

Struggling with getting a good night’s sleep is extremely common with ADHD. It doesn’t matter how early you go to bed or even how tired you feel, sleep doesn’t come easy. Now maybe if we were able to then sleep in as long as our bodies needed that would be fine. But most of us have to get up and go to work or school after only a few hours. 

Meditation…I’m sure all of us with ADHD have tried it at least once. It’s hilarious that it is even a suggestion honestly and it just shows how little the people writing this advice actually know. How are you supposed to meditate when your mind can’t focus on one thing? If you’re ADHD and you can meditate, then congratulations, and I do sincerely mean that. Sadly for most of us though, it doesn’t work, especially when we aren’t medicated.

In moderation, caffeine works exactly the same as ADHD medications according to medical experts. But most of us are already drinking way more caffeine than any of us should be and well…it does nothing. Maybe, MAYBE if we had zero caffeine for months we might see some results going back to it. But telling a world addicted to caffeine to have some as a replacement for their ADHD medication is…well, it’s almost insulting, really. Then you also have to take into account what having caffeine does to your ability to sleep. Personally, I can’t have more than a sip or two of soda after lunch or I will find myself still awake at 2 in the morning. 

What actually works?

Honestly, it seems to be different for every single person. A lot of people say that exercise works for them. Start there. Go outside and walk on a daily basis. Go to the gym. Go for a swim. If that doesn’t work, try herbal tea, try meditation…try everything. Don’t stop searching for whatever it is that works for your brain. The thing is though, you might try it all and find nothing helps. Before you consider anything drastic please, reach out to the support lines in your country. Remember that you are valid, you are loved, and the world would be less without you in it.

Late Addition to the Story

After this section was already written I came across a news story that isn’t really getting any attention or even being mentioned when talking about the ADHD medication shortage…and it REALLY should be. Ascent Pharmaceuticals, a minority-owned company that is one of the United States’ largest producers of generic ADHD medication (by their own estimates they make 20% of the generic ADHD medications in the US) is suing the DEA for blocking them from getting the raw materials they need to make ADHD medications. 

Why is the DEA doing this? They allege that Ascent’s record-keeping is unreliable. “After reviewing these records, DEA lacks confidence in the data provided by Ascent in its quota requests,” a direct quote from the DEA’s denial to the agency.

Ascent’s lawsuit alleges that “while there were some clerical errors in some of its records, none of them normally would cause a manufacturer from be shut down, particularly not in the middle of a crisis of scarcity over the drugs it makes,” according to Ascent’s press release about the lawsuit which was released in early October 2023. 

The lawsuit has been filed in the U.S. Court of Appeals for the Second Circuit.

Autism Meme Explained

This quick guide on Autistic Meltdowns by @livedexperienceeducator is something I like to share at least a couple of times a year because I really do believe that it could save a life someday. An Autistic meltdown isn’t a tantrum and it’s not something that can be controlled. But there are things that we can all do, not only for ourselves but for others if we know what to look for and what to do when it happens. Remember, having an Autistic Meltdown IS a medical emergency and it needs to be dealt with properly and immediately with compassion.

Spot the Signs:

Bolting/Running - Many times in an autistic meltdown the overwhelming urge in the Autist’s mind is to get as far away from whatever triggered it as possible. This might look like very calmly getting up and going outside for fresh air or it might look like jumping out of a moving vehicle or running into a street without looking. 

Lashing Out - In their moment of distress the Autist may lash out at you saying things that are mean or impolite at the very least. These are things that they wouldn’t normally say but they are so overwhelmed in the moment that they can and will say things that may upset you. They may also lash out at you physically.

Crying/Yelling - Sometimes when the stress of a situation builds to a boiling point, like with an autistic meltdown crying and yelling might be necessary. Crying and yelling are natural human reactions to pain, be it emotional or physical, and YES autistic meltdowns are painful!

Loss of Spoken Communication - Not every autistic meltdown results in yelling and crying loudly. In fact, it can also result in a total loss of the ability to speak. Sometimes, the very act of opening your mouth to speak is just too much and so verbal communication stops. 

Throwing Items - During an autistic meltdown there is the very real possibility of objects flying through the air. It might be that the item that set off the meltdown gets thrown across the room without any consideration for direction or if the item or something it might hit will break. The object in that moment is to get the item as far away from the person experiencing the meltdown as possible as quickly as possible without any thinking. It’s like when you find a bug in your shoe and you’re deathly afraid of bugs. Might that shoe go out the window by accident? Yep! Throwing items might also be taking things off shelves and throwing them, again with little consideration for who or what they might hit because in that moment of distress complex thought is nearly impossible.

Losing Control - In an autistic meltdown the person experiencing it might lose control of themselves. One way I have seen it described, though I’m not much of a fan of the description, is that the person experiencing the meltdown behaves like a trapped wild animal. They may soil themselves, or attack you, or do something to harm themselves.

Self-Injury - Sometimes during an autistic meltdown the person experiencing it may end up in a cycle of self-injury, making for a very dangerous situation in which anything could happen.

Freezing or Shutting Down - While some meltdowns might be loud, very distressing affairs, others are far more subtle and easier to miss, like freezing or shutting down. The person experiencing the meltdown might just go totally quiet or even just sit there and stare off into space. While these may not seem as threatening as other meltdowns to the outside observer they are still just as bad the more outwardly expressive meltdowns. 

As you can see there is no one size fits all when it comes to meltdowns. There’s also no way of knowing what kind of meltdown is going to be experienced until it’s already happening. This is why it is so important for you to know the signs of an autistic meltdown. So you can identify what is happening, sometimes even before the Autistic person.

Contributing Factors to an Autistic Meltdown

This section is a list of things that are likely to lead to an Autistic Meltdown. It is rarely just one of these things that starts a meltdown but rather a combination of these things stacked on top of one another or not enough recovery time between different occurrences.

Masking Traits - Masking is…exactly what it sounds like. Many autistic people will put on a mask, a different persona when out in the world and interacting with people. For anyone who has ever worked retail, this is similar to your “customer service face” where you have to put on a smile and cheerfully converse with the customer despite what else might be happening in your life and in your head. Except that the autistic person will do that from the moment they walk out of their house until the moment they get home….assuming they have a home that is a safe space for them. For some the only safe place to remove the mask is in their bed at night.

Sudden or Lots of Changes - Change is scary for everyone but it is even more so for Autistic people who rely on some level of things being the safe and routine like they’ve always known.  When there are sudden changes or a lot of changes all at once it becomes overwhelming and it can even sometimes feel like your brain is being torn in half as part of you wants to stick to the routine you always know while another part of you is trying to adapt to the changes taking place.

Cognitive Overload - The autistic brain is constantly taking in information, much more information than a neurotypical brain. Things that for others just blend into the background are sometimes impossible for the Autist to ignore. So when there is a lot going on and they also have things they have to focus on like work, it can become overwhelming and lead to meltdown.

Emotional Distress - While part of an autistic meltdown is emotional distress, it can actually be emotional distress that causes the meltdown to begin with. Being upset is well…upsetting, and the feeling of upset can be enough to cause a meltdown.

Intense Stress - Stress can be overwhelming and while stress alone won’t typically be enough to set off a meltdown, there are times when it certainly can, if it is intense enough. One thing to keep in mind is that every person, every brain, no matter if they are neurotypical or neurodivergent will react to stress differently. What one person views as a “healthy” amount of stress another might view as completely overwhelming.

Change in Routine - One of the reasons why Autistic people like routines so much is that in their minds it is safe, or at least safer. If they always order the same item on the menu at a restaurant it is because they know what to expect from it and there won’t be any surprises. They like to always take the same route to work because they know where the dangerous spots are and they don’t have to be as on edge all of the time. But, when the routine has to change, that change is scary. Even if it’s something that seems completely innocent and harmless to you, it might destroy their peace of mind and cause that previously mentioned mental tearing feeling, which yes, can lead to a headache.

Sensory Overload - Sometimes the lights are too bright, there’s too much noise happening at the same time, and someone walks by wearing far too much cologne. All of these triggering of the senses can be overwhelming. In fact, it can be overwhelming for neurotypical people too they are just less likely to recognize it and often have a higher tolerance for it before it becomes too much to take.

Lots of Demands - Being asked for too many things is stressful, especially when you add in the stress of having to work out which things have the priority over others. Your boss is calling you at 7 on a Friday night, your baby is crying, and your wife asked for your help getting the turkey out of the oven. Which one do you take care of first? Without any outside directions it can be difficult to work out where you should be in that moment. There are too many demands for your attention and sometimes the only thing you can do is shut down completely…or yell from the stress of it all.

Tools and Tips

This section I feel is the most important section. It’s something that we all need to learn and really take to heart. This section is what will help whoever is having the meltdown, and the people around them get through it safely and without hurt feelings. I will be putting the most important information in this section in all caps so that it can be read quickly and easily.

DON’T GET ANGRY - Keep in mind that the autistic person is experiencing a medical emergency. They may say horrible things, they may hit you, they may ignore you completely…but they don’t mean you any harm. Your anger in that moment and in the weeks following the meltdown will only serve to make matters worse. They need your compassion.

REDUCE SENSORY INPUT - Do whatever you can to make the place they are in less loud from a sensory point of view. This means turning down the lights, turning off anything making sound, and helping them find a place of comfort. If you can’t achieve this because you’re in a public place like a restaurant or a theater then the best thing you can do is take the person experiencing the meltdown somewhere safer and quieter. Depending on the distances involved this might mean going into the the wheelchair accessible bathroom stall with them or taking them to a nearby park. Even just finding a quiet aisle in the grocery store will help reduce the sensory input they’re experiencing.

IDENTIFY TRIGGERS & EARLY WARNING SIGNS - Know in advance what sorts of things might trigger a meltdown and learn what the early stages of a meltdown look like so you can remove the autistic person from the situation as quickly as possible. It can often be difficult for an Autist to see a meltdown coming before it is too late.

MAKE A MELTDOWN PLAN - Have a plan in case a meltdown happens. The fewer questions that you have to ask an autistic person having a meltdown the better, questions WILL just make it worse. So, just like you should have a plan in case a fire breaks out in your house, you should have a plan in case a meltdown happens. Work with the autistic person to figure out what is the best thing to do depending on where you are. At home the plan might simply be something like “get the autistic person to their bedroom, wrap their weighted blanket around their shoulders and give them their favorite fidget while you sit quietly nearby to keep an eye on them.” While you’re traveling it might be a lot more complicated. If you’re in Yosemite they won’t have access to their bedroom, but the inside of your tent with noise canceling headphones and their weighted blanket might be enough.

ALLOW SPACE TO EXPRESS THE EMOTIONS - Don’t tell the person experiencing the meltdown not to cry or to stop rocking back and forth. That will cause more stress and make the experience worse. Give them time and space to express whatever emotions they are experiencing. But! You shouldn’t leave them completely alone if you are worried that they could be a danger to themselves.

REDUCE DEMANDS - One of the most comforting things an autistic person can hear while they’re experiencing a meltdown is “don’t worry, I’ll take care of that for you.” Think about how stressful it would be to be juggling your grandmother’s fine china. Taking just one plate out of the equation won’t take all the stress away, but it will reduce it a bit and that might be enough to help that person calm down.

HAVE AN EXIT STRATEGY - Have a plan for how to get out of wherever you are with the autistic person experiencing the meltdown. Know where the closest doors are to you and if you’re with other people then have a good excuse lined up for why you might need to leave with the autistic person. “Sorry, I have to get up early for an appointment” will allow the autistic person to save face which in turn will make having to leave a party early a little bit less stressful. 

HOLD COMPASSION - Keep in mind that the autistic person is first and foremost a person too and deserving of your compassion no matter what may have happened during the meltdown. They need your help and forgiveness. If you are the person having the meltdown remember to have compassion towards yourself too! You didn’t intend for any of it to happen and you are deserving of love and respect.

SENSORY SPACE/TOOLS - Have the things you need to help calm a meltdown with you. What good is noise canceling headphones in your car if you’re at the front of a standing room only concert? Carry a fidget in your purse. Have whatever the autistic person might need within quick and easy reach. This might mean carrying a backpack filled with sensory items everywhere you go.

Finally, once again it should be repeated that an Autistic Meltdown IS a medical emergency and it needs to be treated like one. Everyone experiences meltdowns differently so what might work for one person might not work for another. Taking care of a person experiencing an autistic meltdown is hard, but, as they are our friends and loved ones…it is our duty and the best way we can show them love in that moment. It’s also important after a meltdown for the person who had it to apologize for anything they may have done during it. Having a meltdown isn’t an excuse for being a jerk.

Jobs Autistic People Love

Autists are some of the least employed people in the world, due to a number of factors that include amongst many other things, jobs that are just incompatible with how autistic brains work. With that in mind I polled my 15,000 Facebook followers and asked them what jobs they have that they love. Over and over again I saw a few different jobs repeating, these are the top jobs that my autistic audience loves.

Creative Jobs

Artist, chef, florist, hair stylist, musician, graphic designer, and writer were some of the most frequently repeated creative careers in the poll. Autistic people are typically very creative people, in fact many of the world’s greatest artists are believed to have been autistic. So it is really no surprise that creative careers are at the top. It can however be very difficult to make money these days in creative fields, depending on what it is you decide to go for. If you’re looking for where the money is, graphic design is a great choice, as is being a florist or a hair stylist. 

Tech Jobs

It probably won’t come as too much of a surprise that a lot of autistic people go into the tech world. Working on computers is much less socially demanding than any public facing position, in fact you’re almost expected to be a bit anti-social. Software development, coding, UX/UI designer are just a few of the tech jobs that I saw mentioned in the poll. While most people would say that starting your own business and making the next big app is the way to go in the tech world, that is ignoring the stress and anxiety that comes along with that. If you’re looking for a low stress job you’re actually better off being a small part of a much larger team like in a multinational. There will be less weight placed upon your shoulders.

Animal Based Jobs

Working with animals also rated quite highly in the poll and I can kind of understand why. Animals are, for autistic people much easier to work with. Their behavior is mostly predictable, you don’t have to worry about making eye contact with them, and they’re not very good conversationalists. They are a blast to play with though! Some of the jobs I saw listed were pet babysitting, dog walking, farming, and animal rescue. Importantly though, one job I never saw was veterinarian and after having become good friends with mine, I can understand why. Veterinarian is a HARD job for anyone. It is emotionally draining and heartbreaking. People go into the job because they love animals, but having to see them hurt or worse for hours upon hours is taxing. On top of that you have to work with the owners who are themselves a whole different challenge. I love my vet friend, but I wouldn’t wish that job on anyone.

Other Jobs

There were a few more jobs that I saw on the poll that were really interesting, and not necessarily ones that you would normally think of. For instance, I had no idea that building scaffolding was a job of its own. But, the person who included it said that it was like playing with Lego and K’Nex in real life. If you don’t mind interacting with the public then librarian might be a good job for you. But, if you’d prefer to stay out of the public eye then jobs like phlebotomy, lab scientist, or factory assembly might be more your speed. 

What do these jobs all have in common? The biggest thing that most of them have in common is that you are working independently for the most part. You might be a cog in the machine, but you aren’t expected to interact with the public or do a lot of group projects. For most of them you get your assignment and work away at it. Obviously this isn’t true for all of the jobs, but I think that if you’re Autistic and looking for a job right now then this might be a great way to work out if the job is right for you or not before you’ve even applied.

Link to a Recent Video

ADHD Story: Why I Don’t Drive

When I was 16, long before I was diagnosed with ADHD I made a decision that postponed my ability to drive a car for 2 years, which is basically forever in teenager years. I had to make the decision to take a health class for the third time in 3 years (because I moved a lot) or wait until I was 18 to be allowed to drive. The Driver’s Ed class, which was mandatory to drive before you’re 18, was attached to the health class and between not wanting to take health again and not feeling like I was ready to start driving yet the decision was easy for me. Even if I lived in a small town with basically no public transportation. 

I couldn’t explain to anyone why I didn’t want to drive, though every adult in my life would ask. I simply knew that the thought of it made me feel the same way an important test in school did. At that time, when the internet was still just a baby, I had no idea about things like anxiety and stress. I just knew the idea made me feel bad.

Fast forward to 18, I got asked by my parents if I planned to start driving…and I said no. This time I had the excuse of being in school and not having time for a job to support a car. It was a line I had thought of many months before and it seemed to satisfy them…even if I knew it wasn’t the reason why. The why was something in my brain. By then I just assumed it was stress. The idea of being in control of a massive machine that is so easy to crash and break or run into people and break them…or worse…no thank you!

So I sat with that thought for 20 years. I moved somewhere with much better public transportation options, I’ve learned to ask for help and rides when I need them, and I use taxis fairly regularly. It wasn’t until my mid-30’s, when I found out I have ADHD that it all clicked into place and I finally understood what I had never really been able to fully explain before.

I am too easily distracted to feel safe behind the wheel. I zone out and suddenly I’m somewhere else when I zone back in. I’m not comfortable with the idea of my brain being in control of a 5,000 pound (2250 kg) machine. It’s beyond being uncomfortable, but there aren’t really the words to describe how the thought of it makes me feel, terror might be closer to the truth than discomfort.

ADHD has a huge impact on your ability to drive. Not only do you have to stay focused, you have to restrain yourself from making risky decisions too. There are so many different ways that driving can go wrong and ADHD make nearly all of them more likely to happen. It has been shown in study after study that people with ADHD do get in more accidents. 

I just wish I had known this when I was 16 so I could have explained it better to adults and peers who didn’t understand my life choice. 

An Update on the Tylenol (Acetaminophen) Class Action Lawsuit

Just in case you missed it, because I did, the federal class action lawsuit that claimed Tylenol caused autism is dead in the water. US District Judge Denise Cote ruled that there was not enough scientific evidence to support the claims that mothers taking acetaminophen while pregnant gave their children autism or ADHD. 

In the 148 page ruling she said that NONE of the five expert witnesses proposed by the plaintiffs had offered a sound scientific methodology, "Instead, the unstructured approach adopted by the plaintiffs' experts permitted cherry-picking, allowed a results-driven analysis, and obscured the complexities, inconsistencies, and weaknesses in the underlying data," she wrote in her ruling.

Lawyers for the plaintiffs, parents of autistic children from all across the United States, claim that their fight is not over and one approach they seem to be looking at is baby food. 

While Johnson & Johnson, the creators of Tylenol recommend that pregnant women continue to take acetaminophen for pain relief as it is one of the most studied medicines in the world and does not cause fetal organ damage like aspirin and Ibuprofen do. 

You can read more about it here and here.

I hope you enjoyed the first issue of the still unnamed Neurodivergent Adult newsletter! I would love to hear your thoughts on the newsletter and how I can improve it in the future. Also, if you have any name suggestions please let me know! I’ve created a post that anyone can take part in over on Patreon where we can discuss the newsletter. You DON’T have to be a paying contributor to take part. So, I’ll see you over there!