Autistic Disclosure Toolkit: A handy guide to help when coming out of The Autism Closet

Each Autistic Person has a very unique experience of being Autistic (and no two Autistics experience Autism in the same way, thanks to how Autism colors multiple parts of our life experience).

NOTE: This post focuses on Autistic People but this toolkit can be helpful for others who are trying to know their brains better.

Some of you may know this already, but my day job (when I’m not creating free resources for the public) is doing work as an independent consultant helping organizations that want to be more inclusive of NeuroDivergent People.

Part of my work (in addition to providing organizational training on NeuroDiversity and helping organizations revamp their policies and organizational cultures) revolves around coaching leaders and team members on how to communicate more effectively with one another.

In executive coaching, I work with executive-level leaders, coaching NeuroDivergent Executives (of various NeuroTypes) to be the best NeuroDivergent leaders they can be, but to do this, one must first know themselves (and how their individual NeuroTypes impact how they engage with the world around them).

When working with “NeuroTypical” Executives (because NeuroDiversity/Neuro-Inclusivity includes ALL brains), we focus on how they can be better leaders to (not just their NeuroDivergent Employees but) everyone who reports to them.

Recently I had a meeting with one of those amazing NeuroDivergent Leaders (who I’ve been working with for a while now).

This leader is working to share their NeuroTypes with others for the first time and inspired me to create a resource that will (hopefully) makes these types of exchanges easier.

It’s a scary place to be. I’ve been there.

In the beginning, these disclosures can be rocky, especially for us late-identified NDs, when we’re just starting to figure out what being NeuroDivergent means to us (after lifetimes of being told our needs are less important than, and should give way to, the needs of the people around us).

Many of us, who are late identified, have grown to be unaware of our needs, neurology, and true selves because we’ve been trying to emulate NeuroTypical norms, ignoring and denying our own needs.

Some NeuroTypes/Brain-Types are easier to explain because society has a greater understanding of them (many people are familiar with ADHD today).

Other Brain-Types are easier to explain because they only impact one or two functions (Dyslexia and Hyperlexia impact reading, Dyscalculia primarily impacts the ability to do math/spacial awareness, and Dyspraxia and Apraxia both impact motor control).

A pink plastic brain

Autism, however, can be difficult to disclose for a few reasons:

1. One large problem when disclosing that you are Autistic to others is the poor understanding of Autism and Autistic People.

   Most people don’t REALLY know what Autism is.

   People who have heard of Autism, but don’t know any Autistics themselves, will think of Rain Man, the Good Doctor, and Sheldon Cooper (stereotypes many of us don’t fit).

   

   why?

2. Something else that can complicate disclosing an Autism Diagnosis is the wide and vast spectrum.

   Each Autistic Person has a very unique experience of being Autistic (and no two Autistics experience Autism in the same way, thanks to how Autism colors multiple parts of our life experience).

   The Autism Spectrum is NOT linear (from low to high functioning).

   The Autism Spectrum is more of a color wheel (or a spider graph) of vast and varied shades (sensory & motor, emotional & cognitive, communication & social, dependency on routine & aversion).

   

   NeuroDivergent Consulting - Autism Color Wheel

3. Another difficulty when disclosing that you are Autistic, especially as an adult, is that sometimes you will disclose to a person who THINKS they know a LOT about Autism (because they know ONE Autistic Person VERY well).

   “You can’t be Autistic! My friend’s kid is Autistic, and you are NOTHING like that kid!”

   Suppose you are not just like that other Autistic Person they know (who often is a child) or are doing something they have been told the one Autistic they know is incapable of doing “because of their Autism” (not yours).

   If you are an Autistic Person who knows your strengths, avoids your weaknesses, and appears confident and happy about being Autistic, it can anger people who have been told (and believe) that Autism is always something negative and has no upsides.

   For years, when parents found out their kids were Autistic, doctors would tell them their offspring had little hope of living happy lives (without lifetime parental support) “because they are Autistic.”

   While this is true for some Autistic People (just as it is true for some non-Autistic People), it is NOT true for many of us.

   In the eyes of some, the understanding that Autistics MAY struggle with some things has been (incorrectly) translated to “Autistic People can’t - followed by a long list of things they’ve been told or believe their loved one can’t do (eye contact, working, having friends, or relationships), ignoring the vastness of experiences, strengths, and struggles, Autistic People have.

   While most people are too far removed to understand Autism and Autistic People, THESE people are “too close” to their own experience of Autism (and trauma) to zoom out and see that Autism is more than what they know it to be.

   Some people (either because they’re too close to one Autistic Person or because they only know stereotypes) will not believe you when you tell them you are Autistic.

   In my experience, there is little you can do to bring these people around, and trying to convince them (because they are closed-minded) is a huge waste of time and energy. Like arguing with a brick wall - not very productive.

What’s most important is getting your needs met, but to advocate for your needs (so you can get them met), you must FIRST know what they are (something a lot of newly/late identified folks struggle with.

I struggled a lot with this when I first learned to advocate for myself after my late Autism diagnosis at the age of 29 (because I had no guidance or help with how to and when not to) share this information with others.

It is my hope that this tool will be helpful to you so that you can create a customized resource, to help you explain how being Autistic is relevant to YOUR OWN experience specifically, so you aren’t dependent on the people you disclose to be knowledgeable about Autism (because most of the time they won’t be).

Autistic Brain-Type Disclosure Worksheet

Disclaimer: I do NOT recommend disclosing this to everyone for various reasons. Some people are not safe to disclose to, and others won’t get it/aren’t worth your time.

In some cases, disclosure may become a necessity.

If you feel a disclosure is needed, but you are unsure if the person is safe to disclose to, I would recommend starting with a Partial Disclosure - disclosing what you need first and how it will help you (EX: I need to wear headphones in the office so I can focus better OR I communicate best in text) vs. disclosing your exact Brain-Type as a test to see how accepting they are of your request.

If people are dismissive when you tell them your needs before you share your Brain-Type with them, they probably won’t improve much after you share it with them.

Ready to share?

Whenever you are ready to disclose, it is not helpful to memorize a medical definition of Autism (because most people you disclose to don’t understand medical jargon).

What’s important is that you can explain what Autism is TO YOU and how being Autistic influences your (very personal) experience of the world around you.

Exercise 1:

There are eight areas below that Autistic People often experience differently. Some Autistics may struggle most with sensory and motor control, while others struggle with communication, emotional regulation, and social things.

Because there is no sized-fits-all answer, only YOU can evaluate each area below and determine which areas create the most struggles (or need the most frequent explanation or advocacy) in your life.

For this exercise: On your own paper, please place the following LIFE AREA items in order, with the one that creates the most confusion/obstacles in your life at the top to the one that causes you the least problems at the bottom.

• sensory

• motor

• emotional

• cognitive

• communication

• social

• dependency on routine

• aversions

Some of these items may create major obstacles for you, and some may be unimportant.

If any of the items DO NOT present themselves in your life, you may cross them out.

This doesn’t make you “more” or “less” Autistic. This is precisely why it’s called “The Autism Spectrum.”

Exercise 2:

Now that you have the eight areas above prioritized, based on which areas have the most weight on your day-to-day activities, it’s time to define how you experience each of the eight areas outlined above and what support you need to be your best in each area.

For this exercise: List 2-5 bullet points for each item in your list above (omitting any you crossed out if they weren’t part of your experience), describing how each item shows up in your life.

FRIST: Transfer your list of LIFE AREAS from exercise one (above) into the LIFE AREAS in slots 1-8 (below).

THEN Use the guide below to fill in what you want others to know about YOU in the “Important to Know.” This is where you explain what you need to be successful and how each area shows up in your life (you may not utilize ALL of the blanks, especially if you crossed out items in Exercise 1).

1. LIFE AREA:

• Important to know:

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2.LIFE AREA:

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3.LIFE AREA:

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4.LIFE AREA:

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5.LIFE AREA:

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6.LIFE AREA:

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7.LIFE AREA:

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8. LIFE AREA:

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Once you’ve outlined and prioritized your items above, you have created a handy “getting to know you” script about your unique Autistic brain.

You can print this list out, keeping the entire thing with you as a reference guide (or script) you can use as you start to advocate for yourself and share your Autistic status with others.

You can also turn this list into flashcards or note cards, with each life area on its own card that you can pull out only when applicable.

This “cheat sheet” is for you to use however you see fit.

I hope this free resource will make your journey easier.