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 fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.
© Leah Kelley, Thirty Days of Autism, (2012)
May I have permission to introduce your model of acceptance to advocacy with the adults with which I work?
I have checked with Karla and she says: “Anything on my page is free for non-commercial distribution with credit given of course…”
As for me, I am happy as well to share anything – please just credit the source. I am working to support others and work to increase social understanding for those who experience the world differently. We need to think differently about those who think differently… and if sharing this supports that – bring it on!!
Swinging by for another read . . . Go ahead yote, push the button . . . What? Again? . . . I feel like I’m doorbell ditching . . . Then playing hide. *presses button*
I checked when I heard the bell… but no one was there. I may have heard a faint howling off in the hills. Was that you ‘Yote?? Next time stick around! I will invite you in for tea and a biscuit… because you are welcome anytime 🙂 Owoooooooooh!!
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Thanks for posting this. As an autistic who is employed some of this is helpful and some of this I already do. I usually tell my employers within a few days of being hired. The issue I run into is employers who don’t understand the disorder. I just tell them I don’t expect them to. I just except them to understand me and what my needs are.
Thank you for your comment Robert. I’m glad you found the post helpful… and love the point that you don’t need them to understand autism… just you and your needs!! That really puts it into perspective in such a real and appropriate way! Love it!
Something that I am constantly wondering about is whether or not to talk to my brother-in-law about being autistic. He is nineteen. I would love to talk about self-advocacy as a way of meeting his needs but I don’t want to hurt his feelings. I love him dearly and want to see him be able to tell people what he is comfortable with. Thanks for your insights.
Thanks to you as well…
This is such a personal issue that has layers and layers of complexity for each individual specific to their situation or context. When we are responsive to and honouring of what we are hearing from others in terms of their pace and space… we are usually on the right track! Your brother-in-law is lucky to have a you as a part of his support system to build his self-advocacy skills when he is ready… or when he might need a little nudge from a respected role model…
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I don’t think I could ever tell an employer. At least not until the overall public perception of autism becomes positive. Because there is so much politics in the software industry, anything you say can and will be used against you. So I exercise my right to remain silent. Although my professional and social life would probably be easier in some ways if people did understand autism, I feel like the public needs a lot more education about it and some of the negative myths have to be dispelled before I would feel comfortable disclosing it at work. I’ve brought up the subject of autism with a few friends, but they respond as if it is a tragic disorder. I have tried a few times to tell them it isn’t really that way, but I get nowhere. So I stop short of identifying myself as autistic. The real reason I don’t make more of an effort to tell friends and some family members is because I would be afraid they wouldn’t believe me. For some reason I would feel horrible if I told someone and they didn’t believe it. But I do disclose my autistic traits and symptoms. Most people I know and work with know about many of my autistic traits, and I can be as open about the traits as I want and they always just think I have a really unique personality. So that is one strategy I have used to let people know I am autistic without ever actually saying the A-word.
I have an autistic cousin who is a therapist and she mostly specializes in working with autistics. I was talking to her about her job one time and she mentioned her reluctance to disclose her autism at work. I was surprised because I would have thought that in her line of work she would have told them that, or at least that they would be able to figure it out since they are all therapists. But she said she had only told one coworker who was a close friend and another person asked her in private and she admitted it to them. She said most of the therapy field is not really open or accepting about such things. I was really surprised. I was even more surprised when she said the director of the clinic she worked at had no idea, and most of the other therapists had no idea either. I wondered how therapists who are trained in diagnosing autistic people can work with an autistic coworker every single day and have no idea. But only one of them figured it out on their own.
I realize, of course, that I cannot fully understand… but I appreciate you sharing your perspective because it deepens my understanding and that of others. This is a powerful thing… and I think slowly we are making a difference to the perceptions and judgements about those on the spectrum.
I can imagine that it might seem almost a belittling of you by others if they were to suggest that you could not possibly be on the spectrum. I have felt that a bit via interactions with others around my son. Kind of like: “What… do we now need to pull out the diagnostic assessment from Children’s Hospital and lay it out for your approval??!?” Aaaack!
I love your suggestion of being open about specific traits, which may be a comfortable strategy for many. I have a handful (or two or three handfuls) of shadow traits. I find that I regularly disclose a few of these such as face blindness and that I cannot remember people’s names. At times, I simply and matter-of-factly state that these are my autistic shadow traits, and sharing this eases the tension of my social discomfort in this situation. I worry that people will think I am rude or self-centred if I cannot remember their name or recognize them in a new context…
I completely respect that many people, like my son H, don’t feel comfortable disclosing their differences in neurology and there is nothing wrong with being private about this. What saddens me though is that H has expressed repeatedly that he does not want to be viewed as a tragedy or as part of an epidemic. I understand his perspective, but in this case whether or not to disclose becomes not so much a personal choice or preference… rather, in some ways it is more a silencing because of the fear of prejudice and potential misunderstanding.
With autistic adults like you sharing your experiences and perspective … I am convinced we can work to change this…
Thank you for your thoughtful and thought provoking comment and for your wonderful Blog!!