Learning about Self-advocacy:
I have recently been occupied with the ideas and complexities of self-advocacy and disclosure for H (and others). I am accompanying H on his journey – but it is not my journey. As I am connecting with adults with autism/autistic adults, I am discovering that this connection is the source of the most useful information. Autistic adults are able to help me better understand the experience of my child, and to assist me in guiding my own steps and supporting his.
There can be a reluctance to self-disclosing autism
One of the things that is shaping my thinking around this has been a recent discussion with my 13-year-old son, H, during which he shared his reluctance to disclose to others that he is autistic.
Another is the connection with Mrs. Teacher Lady, whose letter about her experience and fear of disclosing that she is autistic was published a couple of weeks back. The publication of that letter resulted in an overwhelmingly positive response – and since that time Mrs. Teacher Lady has decided to ‘come out’ as autistic. (The relevant posts are linked at the end of this article.)
Strategies and Supports from Karla Fisher
Karla Fisher from Karla’s ASD Facebook Page creates wonderful visuals to support her ideas and messages. If you are not yet following her – I suggest that you do so. She also has an amazing site: ASD as a Culture that examines Thriving in a Neurotypical World through Cultural Acceptance, Awareness and Advocacy.
“One of the questions I often get is about my disclosure and how I did that in my workplace. Intel is a very good place to work and I had no fear of disclosing my DX of ASD to my boss. Once I told him what I knew, I wrote up the following primer and sent it to my whole team so that they could understand me better. This worked very well for me, and doing this allowed me to feel free and embrace me as an ASD person. While your mileage may vary, I have experienced a huge number of benefits from disclosure. The best way to disclose is to provide access to the information contained in this ASD Primer page.” ~ Karla Fisher
Karla’s strategies to support ‘coming out’ autistic
“Many people write to either tell me that they cannot get their employer or school to “get” them as autistic people, or that they were fired from their jobs after they disclosed. Through countless interviews with people and these issues and through my own journey over the years, I think I have identified some Best Known Methods. Two things I see being done wrong overall are…
1. Not having a specific set of asks. You cannot waltz into a disability office with the ADA memorized, claim you have autism and expect them to “jump”. You also cannot walk in with the DSM description and expect them to extract that information. You MUST have a list of things you need in order to do the work you are there to do. The ADA states that you may only ask for reasonable accommodations and it doesn’t really get a lot more specific than that so be prepared to negotiate the list.
2. Timing. Every time (so far) someone tells me of their disclosure woes at work, it is the case that they decided to disclose AFTER they were in some sort of trouble. They hoped that disclosing their autism would somehow come in and save them from the trouble they were in. Well that sort of thing will only stand to make matters worse I am afraid. My advice is to disclose BEFORE you need support and I personally advise just after your first day (like on your 1st or 2nd conversation with your boss). Come in with a prepared speech and list of accommodations and ways that you will be able to do the job.” ~ Karla Fisher
“I strongly feel that any ASD person who wishes to THRIVE in this NT world needs to take it upon themselves to understand not just the NT world in which they live, but also that they are part of a fairly substantial ASD culture. Perspective taking is a HUGE part of integrating into another culture. But one cannot take another perspective if they do not have self-awareness. How can I relate to your models if I do not know my own? Even after nearly 5 decades of life on this planet, I struggle to understand these basic things. This site is dedicated to helping the ASD person and the NT professional/caregiver see the world through ASD models about important life matters and life skills, in an effort toward giving that ASD person the best options for thriving (whatever their definition of thriving is) in the NT world.” ~ Karla Fisher
No one should feel pressured to ‘come out’ as autistic, and in an ideal world, neither should they feel threatened if they do so. It is my hope that we are slowly moving toward this more ideal world, and I felt it was important to share this information and strategies for those who are planning to do so. I am neither suggesting that others disclose being autistic, nor that they keep this information private. The decision to disclose, or not, is a highly personal one, with complexities that vary from person to person, and context to context.
Thank you, Karla, for being so generous in your willingness to share your resources.
30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.
© Leah Kelley, Thirty Days of Autism, (2012)