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droptix · 1 year ago

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My Women & AFAB Autism Resource List

Those of you who have been following me on social media for a while may know that I recently (at the time of writing this) got diagnosed with autism.

I was 37 at the time, and it came as a shock - first I was extremely surprised, then I was taken aback at how well it fit and how I (and everyone else) had missed this important information for so many years, and then there was grief. A lot of it. Not for the diagnosis, but for how much I had been hurt in 37+ years.

This new knowledge smashed backwards and downwards through all the layers of my memories, traumas, imploded friendships, abuses, past selves, right to my childhood, screaming all the way:

IT WAS NEVER YOUR FAULT

There is a great deal to unpack here.

I can speak at length on what my experience has been like, and maybe I will eventually, but the purpose of this post is to help people who are questioning and wondering if they may be on the spectrum, too. I want to provide some tools, the ones my therapist gave me, because no matter if you are diagnosed or not, the tools can be helpful to you. You do not need a diagnosis to benefit from the tools. You deserve compassion, healing and connection. You deserve to thrive.

It's something I feel quite passionately about, and whenever anyone has a question about this topic, I end up writing quite a lot because I want them to be as equipped and as informed as possible. It is very important to me that people get to know themselves on this level. It is very liberating and (for me at least) it speeds up trauma processing because you finally have key information that was missing before, causing you to just think you are the dud that life shat out, ruining everything you touch. This is not so. You are just a neurodiverse person living in a world equipped for and run by people who are not compassionate towards you. You are not a problem to be solved.

Resources:

Here is the resource list that I tend to hunt down and send to people who are questioning. All of these were given to me by my wonderful, kind and compassionate therapist. She selected the ones that she thought would be most useful for me, personally, and they have been.

Keep in mind, I am South African. The red tape surrounding an autism diagnosis may be different where you are. I am only speaking on my own experiences as a white, middle class AFAB person residing in South Africa. Please keep in mind everyone's circumstances are unique and that I am aware of this fact.

One more thing: Some of these resources mean AFAB people when they use the terms "women" and "girls" because there is a definite gender discrepancy in how autism has been diagnosed until very recently. Please keep in mind that this is not in my control. I know that not all women/girls are AFAB and I am also aware that not all AFABs are women/girls. Please take what information is valuable to you, regardless of gender, assigned or otherwise, and may it be of good use to you. ❤

Embrace Autism

This is a great place to start. Embrace Autism is a user-friendly website containing several screening tests that you can do yourself. These can help give you a clearer picture of whether or not you are on the spectrum. They offer clear and useful information on how each test works, and context for how to interpret the results.

You can fill them out for your own elucidation, but they do not count as an "official" autism diagnosis. For now, you will have to work through a clinician for that. However, self diagnosis is still a useful part of the process, and helps you access the tools you need.

If you are seeing a therapist who is clued up on neurodiversity, you can make notes of which questions really resonated or surprised you and take that to them for discussion.

Access Embrace Autism and all its tests here: https://embrace-autism.com/

2. Sarah Hendrickx

These are some of the first videos my therapist sent me to check out.

While I did not identify with everything said, I did identify with a lot of it. And some of it I thought I did not identify with at first, but then I realised that I actually did, and that my examples were either just more subtle, or different.

Hendrickx describes some typical experiences of AFAB people growing up with autism, including how it typically can differ from the AMAB experience, and as a result often missed by care providers:

youtube

3. This talk by Kate Kahle discussing the gender discrepancy in autism diagnoses:

youtube

4. Hannah Gadsby talking about her adult diagnosis:

youtube

5. Medical misdiagnoses common in Autism

Many people getting an adult autism diagnosis previously had diagnoses like borderline personality disorder, bipolar, OCD and similar. And while I am not saying they are ALL misdiagnoses (this is very much something you will need to hash out with a professional who is clued up on neurodiversity), it is becoming more apparent that the medical model is going through an (in my opinion overdue) metamorphosis.

Medications that help with autism symptoms can also help with symptoms of these other conditions, and vice versa. This is because they are treating symptoms and attempting to give you balance and functionality in your life. So please don't just ditch your meds, take it slowly and please always discuss weaning off meds with your psychiatrist or qualified clinician, and be very sure you are safe and have support structure in place while doing so. It's no use trying to fix something that already works.

Whether or not you have been misdiagnosed, your symptomatic treatment might still be the best option for you, and might very well serve you wonderfully as you continue your journey towards a conclusive autism diagnosis. You may eventually feel supported and resilient enough to reduce about your symptomatic treatment. If and when that day arrives, discuss it with your care provider(s). Take it slowly and don't rush. Remember, you are not a failure for needing supports, no matter if that is in the form of pills, therapy, or physical accommodations.

Here are some podcast episodes by Dr. Theresa Regan discussing this topic. She uses some clinical language that may or may not feel outdated, but keep in mind she is offering a clinician's perspective using the vernacular of her training.

These talk about the ways in which misdiagnosis can occur and they aren't too long of a listen, so don't be intimidated:

Autism and Misdiagnosis: Foundational Knowledge (listen to this one first!)

Autism and Misdiagnosis: Personality Disorders

Autism and Misdiagnosis: Bipolar and Depression

Autism and Misdiagnosis: Anxiety, Trauma and OCD

Here is an article on the subject by The Thinking Person's Guide To Autism (in itself a fantastic resource): https://thinkingautismguide.com/2022/10/adult-misdiagnosis-the-default-path-to-an-autistic-identity.html

6. The overlap between ADHD and autism

This great graphic is from neurodivergentinsights.com. It shows the significant overlap between ADHD and autism symptoms. Some people may have both (sometimes referred to as AuDHD), while some have only one or the other.

7. Support group:

I have been part of this facebook group for a while. I know facebook isn't really that widely used anymore, but I am still on it for marketing my art classes and keeping up with family news.

This group is called "Women with Autism / Autistic Women and Girls" and is self-diagnosis, queer and trans inclusive. All posts have to be approved by admins, and you can post questions anonymously. Posts with images attached require image descriptions for accessibility.

It has been very enlightening and helpful so far.

Access the group here: https://www.facebook.com/groups/352290105213579

8. Social media accounts I follow:

Some of these may be available on other platforms, and I am sure their bios will lead you to those, or to a home page of sorts. This is just where I follow these accounts. I have only listed accounts here that I personally follow and like. I know there are many others. A great place to start would be to check out the list of people that these accounts follow, and explore those.

Autistic Self Advocacy Network (twitter)

Thinking Person's Guide To Autism (twitter)

Autistic Callum (instagram)

The Autistic Teacher (facebook)

Neurodivergent Lou (instagram)

Lastly, you can follow the #ActuallyAutistic hashtag on social media. It's a tag designed to let autistic people find one another, and indicates that the posts are being made by people on the spectrum with real lived experiences of being autistic.

Stay away from Autism Speaks. They are a harmful group run by people who are not actually autistic and promote harmful "treatment" methods and perpetuate stereotypes.

9. Reasons not to pursue a formal (on-record) diagnosis

This one may come as a surprise, but there are negatives to getting a formal diagnosis. The tl;dr reason is institutionalised ableism.

This article by Devon Price goes into more detail: https://devonprice.medium.com/seeking-an-autism-diagnosis-heres-why-you-might-want-to-rethink-that-530e79c272a0

This is also why I ultimately decided against pursuing a formal diagnosis. The tools and resources help me, and that is good enough for me.

10. More resources

Thinking Person's Guide to Autism has quite a robust resources page. You can access that here: https://thinkingautismguide.com/resources

Closing thoughts:

When I first started on this journey, I had a lot of impostor syndrome. It felt like I did not deserve a diagnosis, that I was not "disabled enough" (as if that is even a thing!) to deserve one.

When my therapist offered to go through the diagnostic process with me, so that I can feel better calling my diagnosis official, even if it is not on paper, I started crying. I felt so vulnerable and raw. I told her it felt like I was getting a "get out of jail free" card. She said that a neurotypical person would not call an autism diagnosis a "get out of jail free" card. I couldn't believe that I finally came home to myself after so many years of what felt like being gaslit by life.

My point is, even if you feel like you don't belong under the neurodiverse umbrella or don't deserve a diagnosis and community, even if you feel like you get along in your life fairly well and that you are low support needs*, there is a seat at the table for you and your experiences matter.

If the symptoms and associated problems resonate with you, the solutions and mitigation strategies might, too, and you deserve a chance to live your life more authentically, with more kindness, with more vulnerability, greater understanding and with more self awareness.

It is not a journey that everyone in your life will understand or even respect. But it is a journey worth taking. If it leads you to a place where you can say with certainty you are neurodiverse, great! But you may just end up learning more about yourself and how to exist in a world that can be very hostile to anyone who is perceived as different, and that is good, too. You do not need a label to find the tools useful. You are allowed to feel like you belong.

I really hope this post has been useful to you. I am always happy to answer questions, but I am by no means an expert. I only started this journey a year ago and still have much to learn and unpack, but I feel more like a whole person now than I ever have. It's been a long time coming and I am so glad that it is here.

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*please note: low support needs don't mean no support needs, and you still deserve accommodations even if they seem silly or melodramatic to others

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