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Disclosing an autism diagnosis: A social identity approach

onlinelibrary.wiley.com

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Abstract

Autistic people face a difficult dilemma around whether or not to disclose their diagnosis because autistic people are a stigmatized social group. The central aim of this study was to examine if a social identity approach could be useful in understanding the factors that predict the likelihood of autistic adults disclosing their autism diagnosis in social settings, in the workplace, in educational settings and in the family. The social identity approach predicts that autistic people may cope with this dilemma by using an individualistic strategy to distance themselves from their autistic social identity. Alternatively, they may embrace their autistic social identity and use a collective strategy to resist stigma and advocate for autistic people. We present a survey based cross-sectional study (n = 175) with autistic adults living in Ireland. Participants completed a series of measures; autism social identification, stigma consciousness, and individualistic and collective strategy use to assess disclosing in the four settings. The overall models in each of the four regressions were significant. Autism social identification positively predicted disclosure in social, workplace and educational settings, while stigma consciousness negatively predicted disclosure in the family and in the workplace. Interestingly, over and above these predictors individualistic strategy use negatively predicted disclosure in each of the four settings, while collective strategy use positively predicted disclosure in social, educational and family settings. Our novel social identity approach was useful for explaining autistic adults' strategies to cope with the complex disclosure dilemma. Strengths, limitations, and directions for future research are discussed.

12 comments
  • I'd been seeing therapists and psychologists for 3 years. They determined that I am likely autistic. I told my family this. They tried to get me to check myself in to a long term mental care facility in the middle of no where.

    I got all my stuff, put it in my car, stayed at a motel... only to find my brother stalking me in his car. He showed up within 50 feet of me 3 or 4 times, ... hilariously he is a person who never wears baseball caps, but he seemed to have gotten one so that he I guess would be incognito.

    Every time I saw him I smiled and waved, and he panicked and fled.

    I eventually realized he had enabled Google's parental mode on, apparently allowable because he removed me as an authorized user on the T Mobile plan, and was thus the only 'parent'?

    I managed to disable nearly all of the extraneous bs google forces into android by installing f droid, then the neo store, them various stuff that allowed me to sort of pseudo root the phone by either totally deactivating and uninstalling every bit of google software or replacing other parts with open source software.

    When I had completed this process, within 45 seconds, my whole phone plan was cancelled, data stopped working nearly immediately after i uninstalled the last bit of the parental control bullshit. So... only person who could have done this is my brother. Further, he never again appeared anywhere near me after I disabled the parental control.

    I went to T Mobile and explained what was going on, and their customer service would not allow me to remove my phone number from the family plan. I had T Mobile agents at different locations actually screaming at /other/ T Mobile Agents they had to call on their store phone, livid that there was no recourse for me. Later, a T Mobile employee told me /to call the police on T Mobile/.

    So yeah that phone number was tied into all my 2FA, so I lost access to nearly every online account I've ever had, including banking!

    So I have now been homeless for some months, had my car stolen, been physically beaten multiple times, managed to get held hostage, starved and beaten for 5 days! Got away from that by reverse psychology-ing a fentanyl addict mad man who believed he came from an alternate universe...

    Yeah. So all that is from me telling my family, "Hey, the doctors at the best medical organization in the state think I am Autistic!".

    PS I am only alive because I qualify for SSDI.

    Currently moving across the country via Greyhounds and motels.

    Typing this on a crap phone from a grocery store, my phone with all my contact numbers was stolen in a mugging.

    Cest La Vie I guess.

    • Oh, wow. That sounds rough. Do you have someone you're meeting up with at your new location? Will you be able to get setup with social services?

  • I will hopefully be able to connect with social services, but that may be hampered by the fact that I do not have my drivers license, lost it in a mugging. I was able to start the process of replacing it... but not actually receive it, as I caught covid, for the second time, and didnt have the money to bus one direction toward the license, and then the other direction toward a motel I could afford. I do have the temp lisense they printed out when I made to to the DMV, but it is expired... so ... yeah.

    Do I know anyone at my destination? No. My entire family told me I was crazy, extended family decided to make my homelessness into some new reason to gas light guilt trip and demand unreasonable things of me: Just get a job! What, your hands are broken, and your whole resume/career is tech oriented? Time for more guilt tripping! Also, go to the mental institution!

    (Yeah my hands work /now/, I was able to cobble together splints out of random garbage basically, should probably get actual medical attention, oh wait, tried the ER multiple times and they were too busy.)

    For some perspective... my brother believes the shadow people are real, that everyone has auras you can see if you do this technique with your eyes (basically he is looking at momentary afterimages when you blink fast), and he has a history of hard drug use.

    My father is a QTard who thinks that Tom Hanks' son kills eats and rapes babies for their adrenochrome, oh and he manufactures firearms in a way that he took pride in explaining to me is untraceable. He is in his 60s and thinks that when the apocalypse happens, his C PaP machine needing, heart stint having overweight ass is going to fight off the ... communist crime zombies? He doesnt really make much sense a lot of the time. Oh almost forgot he has had enough DUIs that he had to use an interlock device for nearly a decade. Oh and he is just openly racist and anti semitic /but he is just joking, of course/.

    My mother has the emotional maturity of an 8 year old and nearly always just does/says/thinks whatever my dad tells her to, when she isnt posting live laugh love pics on facebook.

    My grandma screamed at me when I showed up saying that I always make everything about me, likely drunk. Ironically, my dad is a fucked up alcoholic because his dad was a fucked up alcoholic that my grandma divorced. My dad hates my grandma because she hates him because he tried to have a relationship with my grandpa and he is a no good drunk. So... yeah now my grandma is a drunk too.

    One of my uncles fucked off and didnt talk to any of the rest of the family for decades because theyre all insane.

    Another uncle only ever called me to complain about my grandma, or to try to steal my social security number. He has a history of identify theft and credit card fraud, and also is a lousy drunk who lived with my grandma until he waa in his 50s, when he drunkenly pulled a gun on a neighbor and I think basically probably still has an arrest warrant out on him for that, as he fled very quickly, as in /beforw the police arrived/.

    Finally my aunt is a prescription drug abuser who divorced her husband /while he was dying from cancer/, ... she basically has dementia, and is also a massive like nightmare level hoarder.

    Meanwhile I have two bachelors degrees and no criminal record whatsoever, was making 80k as a data analyst when this all started. Ok, unless you count being evicted during everything as a crime... not sure if its a crime, misdemeanor, or counts as its own category?

    All of my friends that I asked for help from during this either didnt respond, thought I was delusional, told me my situation was too much for them to handle right now, or argued with me about how my family cant be that bad.

    So, in a way, I am kind of /glad/ I dont know anyone where I am going.

    • Do I know anyone at my destination? No.

      Be careful when you get there! Predatory abusers have an uncanny radar for people in desperate situations, and autistics are not good on picking up on predatory abusers. Make sure to trust intuition when meeting a stranger and you feel something uncomfortable about them. Also, I think it would be to your best interest to find social services as soon as you can. They might even be able to help you get new ID. Also, social services people are generally not purposefully harmful, so they might be a good support to help you get established.

      That sounds like such a horrible experience. I had to run away from my family too. Right now, I've been ghosting my sister for months, and it doesn't look like I have any intention of reconnecting. I hope you can find some peace, and I think that the physical space from your family to help establish a boundary can give you what you need to recover.

      One of my uncles fucked off and didnt talk to any of the rest of the family for decades because theyre all insane.

      Maybe that uncle could be someone you reconnect with. But be careful as well. Just because they ran away too doesn't mean that they're going to be a healthy support.

      unless you count being evicted during everything as a crime

      Personally, I count it as a trauma.

      told me my situation was too much for them to handle

      I would love to see a study that surveys autistics asking them how often they have heard that they are "too much"

      How are you doing now?

      • Thank you for your warnings... though I am aware of predatory people... and my own tendencies... it is worth being reminded.

        As far as replacing my ID goes, I have already found a charity organization that allows their location to be used as a mailing address for the homeless and thankfully I can order a new drivers license online from the state I am from.

        I will be looking for food banks soon, but I have enough food to last me through the weekend... I've got torn ligaments and extremely sore muscles, I'm pretty sure... I know basic first aid and once took a combat medicine 2 day (6 hours each day) course, so I know that if I can basically just stay in bed, sleep, eat, warm shower and gently stretch, then I will be able to actually walk and carry stuff from the foodbank a mile away after a few days (hopefully less than a week)... actual medical care is too expensive, and I am waaaaay out of my coverage area rofl.

        After that I will be attempting to connect with social services... wherever I decide to try to move too. For now, I have SSDI payments and they are enough to afford food and motel rent each month where I am, so I at least have a sort of temporary home base.

        I am so very, very glad I do not have to stay at a shelter anymore. Basically everywhere I have been, shelters are night only (just go walk around during the winter with your torn ligaments to stay warm!), and generally filled with drug abusers, guys that got kicked out for domestic violence, ... etc. There are of course outliers of people who just got fucked by life for no real good reason... but there are too many violent people to possibly feel safe.

        As I think I already mentioned, Ive already been mugged and had to fight people off and sustain fairly serious injuries... many times now.

        Homeless shelters, in the multiple statea I have been in, are basically geared toward homeless families, which get priority. Single adult men are more or less lowest priority in terms of where society donates money to helping. Generally I actually think that thats about right as single adult men are more priveleged and face less barriers than families or women, but, thia is of course quite shitty for me at the moment. Oh well.

        There is of course a HUGE demand for homeless shelters, far outstripping what services are actually provided, so most organizations aim at a specific demographic.

        Attempt to explain this to ... actually anyone basically anywhere on the political spectrum, to the right of communists and anarchists... conservatives and fascists just outright want the homeless to die, going by the policies they support and/or the rhetorix they espouse.

        I find liberals actually worse though. Theyll act like voting for a minor change that will not meaningfully address the problem makes them morally superior to... you know the position of actually solving the problem. That or they will say thwy support the homeless on the one hand, but ew no not if it means a homeless shelter anywhere near where I can /see/ any of them!

        Capitalism has rotted our brains.

        I digress.

        I am sorry you have had to ghost your sister... its hard to cut a family member out of your life, no matter how awful they are... if you are an innately compassionate person.

        I... a month before my life was turned inside out, my brother at one point told me that I actually /had/ to have my phone on, at all times, and respond to his text messages quickly, all the time.

        Which is bonkers because he would get irritated when I'd ask him if he had read something I'd sent him days ago. It is also bonkers because uh fucking what? Pretty sure its fine and normal to just want to be left alone to play video games, or go out for a walk without distractions?

        But yeah. I am far from them now, and feel a million times better not having to deal with all of their absurd demands, not having to explain what has taken me a decades to learn in the tech industry in 5 minutes because they are both busy, but also /very concerned/ about why I am angry with someone at work pursuing a non workable API proposal for the database I was maintaining, or somethi g like that. /Sounds like a minor detail to me yuck yuck yuck!/ No, no its asking me to double my workload for a project that /will fail/ and then/will be blamed on me/... sigh

        Lets see uh, well the uncle that fucked off would probably actually help me out. Problem is I have no way to contact him after my phone was stolen. He doesnt /do/ social media, and well neither do I.

        Anyway... hah yeah after getting all this off my chest, I am doing better.

        I am probably going to survive, and my fractured fingers have thankfully healed in such a way I will be able to keeo typing, keep doing tech oriented work. I have a warm bed, a door with a lock, no insane people trying to assault me, and no insane people gaslighting me and wasting all my time.

        All I gotta do is recuperate for a weekish, and then incrementally come up with a longer term plan.

        And hah, yes, it kind of enrages me sometimes that wider society just... just actually hates Autistic people being what is normal to them. We are treated as undesirables, socially ostricized, and constantly criticized by people who paradoxically love exploiting the abilities we have, taking those for granted (imagine if housewives were paid for housework? imagine if i was paid for the thousands of hours ive spent setting up computer systems for tech illiterate friends and family!)

        Blargh.

        So yeah I am going to need a therapist once I settle somewhere, haha!

  • These findings highlight ways in which disclosure is complex and doubled edged. Attention to decreasing stigma and negative stereotypes may decrease individualistic strategy use and increase autism social identification. This is important and may in time, support disclosure of an autism diagnosis, which is linked to making a better first impression (Sasson & Morrison, 2019), a greater chance of being employed (Ohl et al., 2017), access to accommodations (Lindsay et al., 2021) and challenging the way others view autism (Botha et al., 2022). Facilitating the development of positive autistic identity and reducing stigma around autism are two ways in which this may be possible. A social identity approach highlights the continued need for increased awareness and understanding of what it means to be autistic in all areas of society, including in the four settings examined in this study. Autistic people cannot do this work alone, therefore supportive advocates and allies are vital. Methods to reduce stigma around autism could include creating autism friendly spaces, positive media representation, greater education around autism for both the public and professionals, and a cultural shift towards fostering inclusivity and understanding neurodiversity (Turnock et al., 2022).

    I think that this study makes a strong argument for why our efforts in this community to reduce stigma around being autistic and to accept each other in here are important.

  • While disclosing I generally prefer to talk of "mental condition/trouble" and list some symptoms than say autism. It also let me "choose" on what I want ppls to adapt

    • I really like that! It helps avoid the stereotypes and stigma while also helping get the accommodations.

  • I tell people I have some mental quirks. If they seem interested, I'll tell them more

12 comments