Neurodivergent Adult's Unnamed Newsletter Issue 8, April 1 2024

Hi there everyone! Autism Acceptance Month has arrived! And so has April Fools Day sadly. It’s not a day I take part in so you won’t find any April Fools jokes in this newsletter. Instead, much of the focus is on autism in honor of Autism Acceptance Month.

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About Autism Acceptance Month

Autism Acceptance Month got its start as Autism Awareness Week all the way back in 1972 in a time when Autism was practically unheard of outside of the medical field. It was created by the Autistic Society as part of their efforts to educate the public about autism and how to support autistic people.

Efforts started in the 2010s to change the name and focus to Autism Acceptance Month. These efforts were spearheaded by the charity Autistic Self Advocacy Network, the most prominent Autism charity that is run by Autistic people for Autistic people. The name was formally adopted by the Autistic Society in 2021, but there are still a lot of people who use the former name Autism Awareness Month, specifically, the charity Autism Speaks which is the largest Autism charity in the world, and considered a hate group by many Autistic adults.

Awareness vs Acceptance

It shouldn’t come as a surprise to anyone who knows autistic people that the meaning of words is very important to them, this is a nearly universal experience across the spectrum. So with that in mind it is easy to see why those who are autistic are pushing for a change not only in the name of the month, but also the focus of what the month is about.

To be able to properly dive into this topic the best place to start is the definition of the two words.

Awareness - knowledge or perception of a situation or fact.

Acceptance - the process or fact of being received as adequate, valid, or suitable.

The focus of Autism Awareness is getting the word out about autism, making sure that the world knows about it and that they know how to support autistic people while being made aware of the difficulties that they encounter. While efforts are still needed in the area of supports and difficulties, the main focus, the awareness, is considered by many autistic adults in the Western world to be done. Thanks to increased rates of diagnosis of autism, much of the Western world, especially the United States knows that autism exists.

“According to the CDC 1 in 36 children today are diagnosed with autism, meaning that statistically every classroom in America is likely to have someone in it who is autistic. By comparison only 1 in 50 children have a peanut allergy.”

Autism Acceptance is seen by many as the next logical step after awareness. People know that autism exists and now it is time for acceptance. Autism Acceptance is about viewing autistic people as equals and giving them equal treatment. It is about closing the gap in employment and creating a world where they can thrive by making accommodations the same as we would for someone in a wheelchair or changing the laws around marriage to allow for same sex marriages. Autism Acceptance Month is sometimes called Autistic Pride Month for its similarities with the LGBTQ+ Pride month. (There is also an Autism Pride Day on June 18th)

The distinction between Autism Acceptance and Autism Awareness is an important one and I completely agree that Awareness isn’t enough. Awareness is very passive, all it requires from people day to day is to know that Autism exists. Acceptance however is much more active. It requires action to be taken to help better the world for Autistic people. I don’t think the job of awareness is done yet.

There are still many parts of the world where Autism isn’t very well known and diagnosis virtually never happens. One such place is Japan, somewhere that my (autistic) husband and I would love to travel to but fear that a lack of autism awareness there will mean that we have difficulty finding food. He and I both have long lists of food aversions and Japan isn’t somewhere that welcomes customizations when it comes to food from restaurants. They aren’t receptive to substitutions or asking for something that should be included not to be there. We don’t really want to go to Japan and only eat at KFC because it’s the only place we know is safe. While autism awareness is increasing in Japan, it is mostly with younger generations, quite simply, more work is needed there and across the world.

I welcome the move to Autism Acceptance and while I sometimes use both terms in the content I create, this is more about SEO than it is my own personal views. In fact, when I use Autism Awareness I always explain why I’ve done so. It isn’t something I would do in conversation, it is purely to appease the almighty algorithm. Perhaps one day I will be able to stop using Autism Awareness, but that is not this year. Autism Acceptance simply isn’t widely known enough yet. But, make no mistake, I am advocating for acceptance in every piece of media I produce.

How to be a Good Autism Ally

Being a good ally for an Autistic person isn’t very straight forward and in fact being a good ally to one autistic person isn’t the same as being a good ally for another simply because there is so much variety in autism. But, there are a few things that are universal and they were put together beautifully in this little comic by Girls Autistic Journey and Introvert Doodles.

Identity First Language

It might seem counter intuitive, especially if you have any experience in the disability community, but Autistic people prefer Identity First Language. This means saying things like “autistic person” instead of “person with autism.” The difference is very important in the autism community as it indicates that being autistic is a core part of their identity, not an addition to it. This is the opposite to many disability communities who want to be viewed as a person first and their disability second. It is the difference between “Down’s Child” and “child with Down syndrome.”

Accept Behavioral Differences

Autistic people might sometimes behave in ways that are considered “outside the norm.” This might be stimming, repeating a word or phrase over and over, or using non-verbal communication. Accepting these is simple, don’t make fun of it, don’t draw attention to it. Quite simply, don’t make things weird. If the autistic person you’re with starts to stim then you might consider having a quiet word with them if they seem distressed. This is just to check in with them and make sure that they’re ok. Stimming can sometimes be a clue that they are getting overwhelmed which could lead to upset and even meltdown. However, keep in mind that they could be stimming for other reasons, like being REALLY happy, so it isn’t always a reason to be concerned.

Respect Boundaries

Many autistic people have boundaries that they don’t like to cross and not crossing them is surprisingly simple, and yet rarely done.

Touching

Many autistic people don’t like to be touched. For some this might be all touching, others might only find touch unacceptable if it comes from strangers and people they don’t like. There are also autistic people who love to touch and be touched. The easiest way to find out what they prefer is to ask.

Eye Contact

Many, in fact I would say it is safe to assume the majority of autists are uncomfortable with eye contact at some level. For many, eye contact is incredibly uncomfortable, almost to the point of causing pain. Others consider it to be an incredibly intimate act that they will only do with certain people or at certain times. The best thing you as an ally can do is follow their lead and not demand eye contact while you’re talking. If you aren’t sure then there is no harm in asking how they feel about eye contact. But it needs to be done in a way that won’t make them feel bad about it or draw a lot of unwanted attention to them.

Personal Space

How much personal space a person wants depends on a lot of factors. One of which is if they are autistic or not. Many autistic people aren’t comfortable with having others close to them. They prefer keeping people at a distance when possible. But, this also largely depends on the culture they grow up in. In the United States, personal bubbles are quite large and it isn’t uncommon to see people who are hanging out together standing several feet apart. Whereas people in places like Argentina grow up with very small personal bubbles and are much more accustomed to people being close by. The best course of action is for an ally to give an autistic person personal space by keeping their hands and bodies to themselves.

Sensitive to Sensory Needs

Sensory needs are where autistic people have the greatest variation and the only way to know what a person’s sensory needs are to talk to them. Talk to them in private, before any sensory needs may need to be addressed.

A Quiet Place

Sometimes autistic people just need a quiet place to calm down. They are constantly taking in stimulus from all around them and too much noise can quickly become overwhelming. Offering to take them to a quiet place or simply leaving somewhere that is overwhelming them is one of the best things you can do to be an ally.

Something Soft

Touching soft things is comforting for all people. This is why they might stroke a cat or run their feet over soft carpet to help keep them grounded. Be a good ally by not drawing attention to the behavior and continuing to interact with them as you have been. Don’t make a big deal of it.

Something Chewy

Many autistic people find comfort in chewing on something. This could be anything from a chew toy to their own hair. For those who enjoy it there is something deeply comforting about having something in their mouth. It can also act in a similar way to a fidget toy by giving their mind some extra stimulation that allows them to focus. Once again, as an ally the best thing you can do is not draw attention to it. Though in this instance the autistic person can end up causing themselves harm by accident, this is a time when you should address it.

Dim Lighting

Bright lights can very often be painful for autistic people in a way that is similar to a person with a headache. A dimly lit room is less overwhelming and uncomfortable. Consider how difficult it is to get comfortable in the bright lights of a hospital emergency room versus the dim lights of a spa. For some autistic people the tolerance for bright lights is much lower than neurotypicals. So, if an autistic person asks if you can dim the lights or maybe turn off the overhead lights and only use lamps, then do it without making a big deal of it.

Realize Therapies and Cures Designed to Suppress Autistic Characteristics are Harmful

Many of the most common therapies for Autism focus on making them conform to fit in better with society and make them “look less autistic.” But, these therapies are incredibly harmful to the mental health of the autistic person and don’t take their needs into consideration at all. ABA therapy is the most well known of these harmful therapies. It has been likened to torture and is often compared to Gay Conversion Therapy has they have similar roots. In fact, the American Medical Association has withdrawn support of ABA therapy.

Support Organizations and Media Led by Autistic People

I previously mentioned Autism Speaks, the largest Autism charity organization in the world. I also mentioned that they are considered a hate group by many. Why? They support ABA therapy and their mission for a long time has been the eradication of Autism. There are no autistic people running Autism Speaks. They are “Autism Parents” who feel that “Autism stole their child.” They have supported mothers who have attempted to kill their autistic children and a big part of their mission is to “cure” autism. Hopefully you can see why a people who use identity-first language might find this distressful.

The best autism experts in the world are autistic people themselves. So the fact that Autism Speaks doesn’t have any autistic people running it really does speak volumes. If you are going to support any organizations then make sure they are run by autistic people. The biggest of these is ASAN - The Autistic Self-Advocacy Network.

Why Self Diagnosis is Valid

I feel like it’s finally time to dive into one of the most controversial views in the neurodiversity community. It’s one that divides the community quite a lot and that is if self diagnosis of neurodiversities, especially ADHD and Autism is valid or not.

There are many who believe that only a trained professional can diagnose you with a neurodiversity while others see the complexity that surrounds getting an official diagnosis. I personally believe that self diagnosis is a valid alternative. In an ideal world we would all be able to get diagnosed as young children at no cost with no traumas around doctors and those doctors would all be up to date on the latest information…but we don’t live in that world. Instead we live in a world where there are doctors who still believe that autism is only something that little boys can get. Where diagnosis costs thousands of dollars and an official diagnosis can prevent you from doing things like adopting children or moving to certain countries. You can also be prevented from getting a diagnosis because of family members who don’t believe you when you say you think you might be autistic.

I’m going to use this infographic from @adulting_with_autism_ to explain the different reasons why self diagnosis is valid.

Medical Diagnosis Can Be Expensive - It can cost thousands of dollars and months of visiting medical professionals before you can get an official diagnosis. This makes it impossible for anyone who is lower income to get diagnosed. Consider the economy we live in today. Would you be able to afford getting diagnosed right now? What if you didn’t have a job? Most autistic people (including those not diagnosed) don’t have jobs.

Humans are Experts in Their Own Minds - It’s extremely unlikely that you’re ever going to be sitting in a doctor’s office and have the doctor ask you if you’ve ever considered that you might be ADHD or Autistic. The most common scenario for starting the diagnosis process as an adult is going to the doctor and telling them that you think you might be neurodiverse. Why? Because you are the foremost expert on what happens in your own mind. You see the whole picture, because you are with your mind 24/7. If you’d like a comparison then consider breast self-exams, which you should be doing monthly in the shower (even if you’re a man). By doing them regularly you become aware of what your breast feels like and you can identify any odd changes to tell your doctor about it. Even someone like your spouse who arguably spends more time with you than anyone else, may not detect the changes in your breasts. A doctor who sees you once a week for 2 months is also not going to be able to see the full picture of what is going on inside your head.

Family May Prevent Assessment - Families are…complicated to say the very least. You may be young and unable to get a diagnosis without parental consent or you may be facing that part in the diagnosis where you have to ask family members to give their accounts of who you are. In both situations your family, especially your parents have the ability to stop you from getting an official diagnosis which you might rightfully qualify for. If you don’t have a great relationship with them, or they want to save face, or they simply don’t believe in ADHD/Autism then your official diagnosis is stuck. Does that mean you don’t have autism? No. It just means you can’t get it diagnosed.

Diagnosis Criteria is a Poor Checklist of Stereotypes - In Issue 2 I explain why my brother went undiagnosed for more than 20 years after the doctor who was doing the diagnosis test decided that he wasn’t autistic because he didn’t behave a certain way in one area. She was operating off a checklist and as soon as she came across a box that she couldn’t check off the test was done. She packed up her bags and left. This checklist of stereotypes doesn’t take into consideration the complexities of humanity or the complexity of autism. Not everyone with autism (or ADHD) behaves the same way because we are all different and have had different life experiences. I for one don’t have anger issues, something that is absolutely part of the checklist for ADHD. Does that mean I don’t have ADHD? No. It just means I don’t get angry easily.

Diagnosis Criteria Ignores Gender, Race, Sexuality, Culture & More - As I said above there are some people who have doctors that believe autism and ADHD only happen in little boys, and many times there is a race component too. Can you be Autistic if you’re a successful black businesswoman? Yes! But…there are many doctors out there who would deny her a diagnosis because she doesn’t fit into the checklist. Girls have always been underdiagnosed because of masking and societal expectations placed on girls.

Medical Diagnosis Confirms Autism, But Doesn’t Create It - One of the most common misunderstandings I see from people who don’t believe you can self-diagnose autism is that the Autism somehow only becomes real once you have a diagnosis. Like how toast is only bread until the toaster dings. But that isn’t how autism works. Autism is like a birthmark. It has been there with you since the beginning and it will always be there. But, how often do people go and get their birthmarks diagnosed? I certainly haven’t.

Discrimination Within the Medical Profession May Prevent Diagnosis - Medical discrimination is a very real problem across the board. Women often get told their pains aren’t as bad as they think they are. For instance…did you know that period pains can be more painful than a heart attack?! And yet, women are still expected to go to work while experiencing that level of pain on a monthly basis. Medications are often not tested on women, even when women are the intended target for said medication. I could go on…but the point is, discrimination in the medical field can and does prevent diagnosis of everything from cancer to autism.

Assessment Waiting Lists are Often Long - There are parts of the UK where the waiting list for an ADHD diagnosis is 5+ years. Are the people who think they might be neurodivergent supposed to wait around for more than 5 years and continuing to suffer because they can’t get an official diagnosis? Or should they start using the coping mechanisms and tools meant for neurodivergent people now? When you have chronic fatigue or chronic pain you don’t wait for an official diagnosis before you get a wheelchair. You get a wheelchair when you feel you need one. I know this from personal experience. You don’t get any sort of official wheelchair user diagnosis…you just do it. Now, if you want help with funding for that wheelchair or you want a disability plaque to go in your car then yes, you need some kind of diagnosis, just like you need for getting ADHD medication. But, if you decide not to medicate or you can buy your own wheelchair…then you can just do it, no diagnosis necessary.

Medical Trauma May Make Diagnosis Unfeasible - If you have a lot of trauma around medical settings then you may not be able to get a diagnosis. You might decide that the stress and mental anguish you have to go through for months visiting a doctor is just too much…and that is okay. No one should tell you that you need to “man up” or “be an adult” around things that cause you trauma. That is cruelty plain and simple.

Hot Wheels Creates Fidget Car for Autism Acceptance Month

Mattel, the makers of Barbie and Hot Wheels has teamed up with ASAN, the Autism Self-Advocacy Network to bring out a new car for Autism Acceptance Month that is both a toy you can play with normally and a fidget spinner that also allows for open-ended sensory play. The car works both upside down and right side up while also having the ability to spin.

The car is called Flippin’ Fast and the packaging will be easy to find with the autism rainbow infinity symbol right on the front along with the logo for ASAN. It is in the toy aisle right next to all of the other Hot Wheels cars, helping autistic kids feel like they are the same as any other kid. It is also being sold for $1.25 SRP, an amazing price in this, or any economy.

Mattel has been working with ASAN for some time now, starting with Bruno, the brake car who is autistic. He was introduced to Thomas & Friends in 2022.

It’s wonderful to see a toy company working with ASAN, which is the largest autism charity that is run by people who are actually autistic. Far too often brands will pair with Autism Speaks, not knowing their history. I hope that in the future we see ASAN teaming up with even more organizations to bring us great things. Check out Issue 4 if you want to know more about which autism charities you should be supporting.

Source: https://www.businesswire.com/news/home/20240326156181/en/Hot-Wheels-Unveils-New-Die-Cast-to-Encourage-Open-Ended-Play-Ahead-of-Autism-Acceptance-Month

That’s all for this week. If you enjoyed this week’s newsletter or you learned something from it please consider sending it on to your friends and family who might enjoy it too. Have a great Autism Acceptance Month and don’t forget to drink water!