r/ABA • u/RadicalBehavior1 BCBA • 6d ago
Journal Article Discussion New study finds online self-reports may not accurately reflect clinical autism diagnoses. Spoiler
https://www.psypost.org/new-study-finds-online-self-reports-may-not-accurately-reflect-clinical-autism-diagnoses/49
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u/kenzieisonline 6d ago edited 6d ago
Edit: I am specifically talking about people who work with high support needs people in a service/medical context who openly identify as autistic but are self diagnosed
I literally almost made a post about this yesterday after I saw one too many “I’m pretty sure I’m audhd” posts.
Self diagnosis is not valid for people who work in ASD services. Or really any field where you work with high support needs people.
In this field you see day in and day out people whose disability affects their functioning so much that they need to modify their entire lives and the lives of people around them in order to survive. I literally knew a family that sold their car to pay cash for their autism diagnosis in order to access services. So to walk around saying that your quirks and habits make you disabled is absolutely insulting to our families and our clients.
It’s also insulting to late diagnosed people as well because ASD burn out from masking for a lifetime is very real, and those symptoms again are too severe for people to hem and haw about spending money getting on waitlists and seeing a specialist.
If working in this field has truly opened your eyes to your own neurodiversity symptoms and they are not affecting you to the point that it is “worth” the hassle and barriers of a diagnosis then you do not get to say that you are “pretty sure you have” anything
edited to make it sound less HR and more about the phenomenon amongst specific types RBTs that I am adressing
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u/meowpitbullmeow Parent 6d ago
I needed work accommodations so I got the diagnosis. It cost me $1500 and many hours of time. But now I have a diagnosis that makes fucking sense and I can get the work accomodations I need for it
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u/kenzieisonline 6d ago
Right for people with nuerodivergence, the administrative barrier of medical diagnosis is a nessecary part of their journey.
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u/Expendable_Red_Shirt BCBA 6d ago
“I’m pretty sure I’m audhd so I need work accommodations” posts.
Can I ask you, if an accommodation is going to make someone a happier and more productive employee, why wouldn't you grant it? Just because the government can't force you without a slip of paper doesn't mean that granting workplace accommodations should only be for the diagnosed.
Think about those late diagnosed people you're so concerned with... Wouldn't it have been easier for them if they got their needs met before they had that late diagnosis?
I'll admit, I'm a bit biased. I think the neurodiversity community is too intent on emphasizing differences. I think that labels don't matter as much as people think and that we are really far more similar than we are different. And emphasizing similarities will help build community and compassion.
But sometimes, imo, the barriers and hassles, in addition to all the other shit people are getting thrown at them, are too much to overcome.
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u/kenzieisonline 6d ago
So both times I saw it yesterday it wasn’t in the sense of “I’m going to HR”
The first one was someone complaining about getting personality based feedback because they are audhd, then later in the post it’s revealed they have a childhood add dx and were “pretty sure they had asd”
The second was someone complaining they were taken off a case and said it felt like discrimination because they were self diagnosed autistic.
To me if you work in a setting where everyone who comes through the door HAS to have a medical diagnosis, it’s gross to be publicly “self diagnosed” and expect the same treatment as someone who has a medical diagnosis.
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u/Expendable_Red_Shirt BCBA 6d ago
I'm not saying just because someone has a diagnosis (self or official) makes their accommodations reasonable. I'm saying that if you're willing to make an accommodation for one person, why not be willing to make it for others?
Also, I think you have a fundamental misunderstanding of ABA. You don't need to have a diagnosis to benefit from ABA. You do need to have a diagnosis to get insurance to pay for anything. But that's a bad part of our system, not a good one.
Overall, I think this rush to judge people for just wanting some help is pretty gross and not becoming from people in a profession that should have empathy as a cornerstone.
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u/avid_reader_c RBT 5d ago
I agree with you Expendable_Red_Shirt. I remember being in a mainstream second grade classroom and the teacher let ANY kid sit on the wobble seats as long as they were being safe, which I thought of as true inclusion.
I think it would be great to have this mindset in other contexts.
My cousin was self diagnosed for a while and after I encouraged him to get an "official" diagnosis since they had healthcare, reasonable access, AND wanted (possibly needed) work accommodations, they did. Some of the work accommodations are simple things like having things in writing. I sometimes I'll ask supervisors, "Hey thanks for telling me that, I'm afraid that I'm not going to remember that since I only see this client once a week, can you put this in the group chat/email this to me/make sure it's in the supervision notes so I can refer to it?"1
u/kenzieisonline 6d ago
In order to receive aba you need a medical diagnosis, signed a provider in a state with one doctor that sees kids for asd evaluations and as a result I have seen just how people who need medical support are willing to go for that “piece of paper”
And yes, the community model of disability access is superior to the medical model but we live in the US so that’s just how that cookie crumbles
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u/Expendable_Red_Shirt BCBA 6d ago
In order to receive aba you need a medical diagnosis
That’s factually inaccurate. That’s an insurance requirement not an ABA requirement.
You know what OBM is right? Do you think businesses are getting medical diagnoses?
And yes, the community model of disability access is superior to the medical model but we live in the US so that’s just how that cookie crumbles
Except you’re advocating for expanding this model beyond what’s required. So you’re supporting it morally…
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u/kenzieisonline 6d ago
I said very specifically “if you work in this field” (but noted I should have clarified “if you’re providing medical EI services”)
Barriers to diagnosis are very real and some populations have systemic and cultural barriers HOWEVER once you opt in to providing medical services for high support needs people, you don’t get to “tee hee touch of the tism” at work.
I am talking to an extremely specific population (in an extremely specific subreddit) that is problematic and gross.
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u/Expendable_Red_Shirt BCBA 6d ago edited 6d ago
This isn’t a specific subreddit, it’s for all of ABA, of which autism services, let alone through the medical model, are but a part. OBM is in the ABA field. You’re coming off as very ignorant right now.
I also fail to understand why having compassion and offering support for some people means I can’t do it for others. Overall I find your lack of empathy to be alarming for someone in this field.
Just because you use the medical model and necessitate a diagnosis in your job doesn’t mean every does it nor does it mean that anyone should do it.
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u/kenzieisonline 6d ago
This sub is literally 90% RBTs complaining about about medical EI services…..
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u/Expendable_Red_Shirt BCBA 6d ago
This sub is for all ABA practitioners.....
But fine, I'm willing to be proven wrong. Can you show me where that's written that it's only for medical RBTs.
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u/SenseOk8293 5d ago
Yes, and
overemphasizing differences is not limited to the neurodiversity community. But everyting you said is correct.
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u/kingozma 6d ago edited 6d ago
I’ll be honest, the only reason I got a diagnosis is self diagnosis. That’s why I can’t really abide by this idea. Not all autistic people get the help and attention they need early on and self diagnosis is an extremely common part of late diagnosis.
Accommodations are given based on symptoms, not your disorder. I was just given a sheet to fill out for work accommodations and it kept saying over and over “Do not state your diagnosis”, I’d imagine partly because it’s trying to protect workers from discrimination, but also because - if you have all the symptoms and no diagnosis, does that magically mean you don’t need accommodations?
I think there is some serious misinformation out there about what ADHD and autism are, but this hard line “Without a professional diagnosis, you can’t possibly be neurodivergent” take isn’t helping anyone.
(I’m encouraging empathy for people you guys have already decided are evil invaders though so I won’t be too surprised when this gets downvote bombed.)
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u/Ok-Yogurt87 6d ago
Self diagnosis can help you with seeking out a diagnosis. But using a self diagnosis to identify with a disorder does not get you treatment, accommodation at work, or any other form of services. Relying on self diagnosis alone should not make someone autistic.
If finances is the main barrier with a formal diagnosis that's okay. However, the main reasoning is that the non practitioner is not capable of ruling out disorders or giving a differential diagnosis. Bipolar, ADHD, OCD, narcissistic personality disorder, general anxiety, social anxiety disorder, pragmatic communication disorder, and paranoid schizophrenia all have overlapping symptoms with ASD. If it's cyclical it's bipolar. If the responds to treatment it can be schizophrenia, if it's situational anxiety. Unmanaged anxiety must be ruled out first.
My story is:
I have two neuropsychs. One 7 years ago for adult ADHD C. I just start my counseling masters degree and became familiar with disorders and identified with them. However, in the masters program (and medical education as well) we, the professionals that will be diagnosing patients/clients are taught to avoid self diagnosing.
I went to see a psychiatrist that diagnosed me with anxiety a few years before that I didn't agree with. Got the referral and was only diagnosed with anxiety due to history(the psychiatrist) and ADHD-C. During this exam the psych had to rule out bipolar.
Then a few years later I started working in ABA and ended up working with a kid that was being taught complex mands. You would state a scenario and the child would have to respond with what it means. An example was you tell your friend you're going for ice-cream and your friend replies "I like ice-cream." The answer was that is a mand for invite. I thought those were all just statements. Another was during this time other staff would have to pull down their face mask to communicate with me because I couldn't perceive their responses with eyes alone. They and a counseling intern supervisor that just diagnosed people all day hinted as professionally as possible that I may be autistic.
Accepted it but didn't think finding out would change anything. That is until I tried to have conversations at dog parks and not people in college or my career. I realized very quickly that I did not understand what they were talking about half the time and I use a very broad vocabulary. When I returned to ABA most of my communication was over the phone and then the defecits creeped in again because I couldn't respond to facial cues. That's when I sought a neuropsych. I made sure not to research the topic outside of the dsm-5 and just taking the RAADS-R. I didn't want to skew the results.
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u/kingozma 6d ago
Like I said though, this form I was filling out was specifically asking about symptoms and not a diagnosable disorder. It quite literally can get you treatment, accommodation at work and other services.
I think there’s this very knee-jerk “NONONONO” response when some autistic adults actually start talking about how they got diagnosed and how they realized they were autistic that as professionals I think would be good for us to work on.
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u/Ok-Yogurt87 6d ago edited 6d ago
Nothing to work on. Accommodations come from a medical professional in almost all places. My service dog letter does not have my diagnosis but my therapist knows it. When I was disabled with a knee injury the doctor looked at the job duties and made recommendations on the injury. The literal symptoms of ASD IS the disorder. If you don't meet the symptoms you get diagnosed with pragmatic communication disorder. You said you took an assessment and went for a formal diagnosis.
I with a mental health counseling degree that have diagnosed others is not allowed to self diagnose. Many self-diagnoses get diagnosed with anxiety and once it's treated they no longer felt the symptoms of ASD. Others OCD, NPD, ADHD, so on and so forth.
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u/kingozma 6d ago edited 6d ago
You’re saying a lot of “If you do this, then you get this” about things that don’t really work the way you’re saying they do. It didn’t work that way for me. I am formally and professionally diagnosed at this point, and I was right when I DID self diagnose. My diagnosis process did not look the way you’re saying it did. You might have to consider the possibility that you do not know the intimate details of what every single stranger online is going through.
Not everyone is right when they self diagnose but it’s not really my business if I’m not their therapist, is it? I think finding it ethical and appropriate to question someone’s right/ability to work based off of their mental health issues is a slippery slope that no disabled person should feel comfortable and safe with. A very basic thing we need to understand is that just because we work with autistic children, it does not mean we can tell who is and isn’t autistic with enough accuracy that we can go around telling people that they aren’t autistic because they said the phrase “self diagnosis is not inherently always violently invalid” on the internet.
That’s great that a lot of mental health problems disappear with anxiety treatment. Mine didn’t. I assume you’re an adult so you won’t feel the need to keep pressing me on this.
“Nothing to work on” is a dangerous assertion in most situations.
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u/Ok-Yogurt87 6d ago
You're high and mighty but you went and got a formal diagnosis. You wouldn't qualify for ABA services with just that accommodations sheet. The requirement is the psych diagnosis. I required a neuropsych for my workplace and school accommodations so that cancels out your argument. Were talking about those that take a RAADS-R and now claim ASD without ever ruling out any other potential disorders like anxiety. That is the difficult part. Some that do go get a formal diagnosis until their doctor and parents disagree with their findings for various reasons(the symptoms do not affect them across multiple domains). I do know how it works there's a literal manual on how it's done. The DSM-5.
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u/kingozma 6d ago
Okay - like I said, there’s this knee-jerk “Oh shit, I have to get in a fight online!” response that might need to be worked on here because all I said was “Self diagnosis is part of getting diagnosed for a lot of autistic people like me.”
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u/Ok-Yogurt87 5d ago edited 5d ago
Oh shit I have to protect my other profession and encourage formal diagnoses because I, a diagnosing professional, am not allowed to make a self diagnosis for myself.
No it is not actually. Most asd is diagnosed as a child. If is why the word stereotypical behaviors exists. You post a lot on subjective mental health ideas you're quoting as generalized fact. Yikes.
Thank you for proving my point!
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u/krpink 5d ago
I have no problem with self-diagnosis as long as people are honest. My problem is that often those people who are self-diagnosed are often the loudest online. They claim they are speaking for all autistic individuals. They bash ABA. Without a medical diagnosis.
It feels gross
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u/kingozma 5d ago
Yeah, I wish people who were trying to figure out if they’re autistic or not knew how to kind of shut up and mind their own business on things they did not experience. If they DID experience some shit with ABA then alright, by all means share, but most people who are self dxing likely did not get ABA as children.
This is honestly an issue in every marginalized community that you can occupy without immediately realizing it when you’re born. People like to get really loud to compensate for how insecure they’ve been made to feel about themselves and I get it but like… This isn’t productive or healthy LOL
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u/RadicalBehavior1 BCBA 5d ago
I agree very much.
I know many adults who sought diagnosis after realizing that it explains so many of the barriers.
Unfortunately, I know twenty five times that many people who want to leech from the attention that the autism community legitimately requires as a form of outreach and awareness. They then say to themselves "oh I am awkward in groups", take a five point informal questionnaire selecting all of the obvious traits, and then begin to tell people that they're autistic.
I have young family members who have jumped on this bandwagon, and one who went from doctor to doctor trying to convince a formal diagnosis out of each without luck. She eventually just shrugged and is still telling people she has autism.
One of the most damaging things, I know, an autistic person will face is the "but you don't look autistic" bias, a cruelty that almost guarantees masking.
However, coming from us, the behavior analysts, the special ed teachers, the RBTs, the SLPs and OTs, the argument isn't " You don't look autistic" but "please stop pretending to be autistic, your anxiety alone doesn't meet the criteria. You're diluting the struggle that people who have to live with these traits actually suffer"
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u/kingozma 5d ago
Let’s be fair, a lot of people who are absolutely autistic have run into ableist doctors who just don’t want to diagnose us because we are of an “atypical” profile - we’re female, we’re a racial minority, we’re an adult, we don’t have the symptoms of a little white boy, etc. I’m not trying to say that this person you’re talking about IS for sure autistic, but I am trying to say that the “Going from doctor to doctor ” thing is not necessarily a sign of faking on its own.
I guess my question here is, how can we possibly address this misinformation problem by invalidating people who think they are autistic? The natural first response of any person who feels unheard and invalidated is to double down and defend themselves. I think it would be much more effective to actually talk to some of these young people and try and figure out where these symptoms are coming from, if we’re so sure it absolutely must be anxiety and cannot be autism.
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u/caritadeatun 6d ago
Yeah because your work accommodations don’t involve a permanent 1:1 caregiver or structural modifications
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u/kingozma 6d ago
I don’t agree with your hypothesis about the forms I was looking at with my eyes, LOL.
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u/kenzieisonline 6d ago
So I have a sister who was misdiagnosed/treated like a bad kid in childhood and has since been on that very challenging journey of adult asd diagnosis.
Self EVALUATION is an essential part of late diagnosis. And yes there are very real and very ableist barriers to getting diagnosed as an adult but if you work in a mental/behavioral health field, you notice symptoms in yourself and you won’t work through those barriers, then I’m sorry as a fellow behavioral health professional, i think less of you for claiming the diagnosis.
Adult diagnosis is valid, self diagnosis is not
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u/kingozma 6d ago
Self diagnosis doesn’t equal not seeking a professional diagnosis. Like I said, I am diagnosed. Please be careful when you read the phrase “self diagnosis” to not project a stereotype onto someone that is counter to what they are saying.
I have known I am autistic and have ADHD since I was very young. I have since gotten proof of that from multiple psychiatrists. My autism and ADHD did not start with diagnosis, it started in childhood.
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u/kenzieisonline 6d ago
I mean most people will say something like “waiting to be diagnosed” but you cannot deny there is a big population of people, especially in this field, that see self diagnosis as completely valid and in this specific setting I do not believe it is the case.
What my opinion boils down to is: if you work with autistic people, it’s gross to say “I’m autistic” without a pro diagnosis
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u/kingozma 6d ago
Sorry, autism is genuinely just such a huge and widely varied disorder from person to person that I don’t really think it’s cool to invoke “But you work with higher support needs kids, so how can you as a low support needs autistic POSSIBLY feel valid?!”
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u/kenzieisonline 6d ago
I get what you’re saying and I still disagree. Again, specifically to people who work in medical disability services, the job gives you a lot more tools to overcome those barriers and I don’t think it’s acceptable to publicly claim a diagnosis that a doctor didn’t give to you in a setting where your clients have to be medically diagnosed
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u/FrootiLooni 5d ago
I totally get what your saying here and mostly agree, but as someone who's just started in ABA who's been told by schools in the past and doctors when I was a kiddo I display trairs of autism, you can still be disabled from it?? Like I only don't have a diagnosis just because I have goals I want to accomplish that would make it harder to do (I.E traveling abroad to study, getting a Visa with my partner to live with him, etc) Like I'm probably a level 1 autistic person anyways and have adapted but autism still does affect my life on a emotional and social level and to say that you can only be autistic if your changing your life around significantly/are profoundly disabled pushes the stereotype that "you don't look autistic/display autism enough!!" Which is crazy your pushing that considering you work in aba and you and I damn well know we work with clients across many different spectrums of autism from level 1 to 3!
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u/kenzieisonline 5d ago
I won’t be mean because you’re new to the field and sound young, but I am not saying you cannot be autistic without a pro diagnosis or that there is never an appropriate context for self diagnosis.
However, when your day to day work is in autism or disability services, which are gate kept behind medical diagnosis, it is insensitive to publicly identify as on the spectrum when you are self diagnosed.
It’s one thing to have inside thoughts that you may have asd. But it’s another to claim some sort of lived experience credibility when you can’t even bother to do a provider search from the website on the back of your mom’s health insurance card. (Ok sorry that was a little mean, cost of health care is a very real barrier, but again, those with higher support needs do not have a choice)
And yes, medical diagnosis comes with barriers and limits, but your are insanely lucky you are able to even do a cost benefit analysis of that. Most people (at least that I serve) do not have that luxury
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u/FrootiLooni 5d ago
Again I don't fully disagree cause I can see it being insensitive or offensive if your just self diagnosing based off of pop psyc articles and/or surveys online. But I feel like, at least in my case, it's valid since again I've had several professionals tell me I show signs along with my mom doing heavy research on it as well as myself. Plus when your experiencing the effects of people who can clearly tell there's something off with you, and you know for 99% sure it's autism or at least some other nuerodivergantcy, I again don't see the issue. Even then whether or not you find it offensive its not your buuisness to question someone or judge if them being self diagnosed and open as being autistic is valid as you don't know their lived experiences or their story
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u/kenzieisonline 5d ago edited 5d ago
Super valid, to exist on a plane of disability where medical care is optional because it interferes with your leisure activities. Gross
Edited to add: it’s one thing to put it in your tumblr bio and claim the label socially, it’s an entirely different thing to claim the diagnosis professionally based on a comment from your school counselor and your own “research”. To make it out like your symptoms and deficits just as valid as the kids we work with who’s families are FORCED to get dicked around by the medical system for essential services that they need to survive in this context is unacceptable and offensive.
There is NO UNIVERSE in which your lived experience is even on the same plane of existence as a child that doesn’t speak at 5 years old or a child who’s sib is so severe that they’ve been hospitalized or a kid with feeding aversions to the point of a gtube. Those are the people that you’re looking in the face and saying “teehee I have asd but I’m not diagnosed because I want to move to Europe”
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u/FrootiLooni 5d ago
Ok wow lol, I thought maybe you were arguing in good faith but I can see you not. Thanks for invalidating my experience because I'm not as disabled as clients you've worked with 🙄. I litterally said several professionals. And yeah they are valid LMFAO?? Again not every autistic person is gonna be on the same level as someone with a feeding tube or someone is nonverbal?? Like I never said my experience of being a level 1 autistic person Is on the same level, I just said I still experience the symptoms of it. Such as sensory issues, hard time forming relationships, understanding social cues, etc. Like my mom told me I was litterally almost nonverbal at one point and barely talked to anyone and I had a speech impediment as well, of course I don't have these aspects anymore as I've gotten older and did get help for these.
Like i fully agree it's fucked up in the case of more severely autistic people that they are forced to get fucked with and picked around by the medical system, but that's on the Healthcare system. I understand that I'm privileged enough to be able to not get a diagnosis and know what my symptoms are. And I also understand getting a diagnosis, while in some ways beneficial possibly in my case, will also take away opportunities or things I want to experience or participate despite being able to regardless of my disability.
But yeah I'm just faking ASD because "I wanna move to Europe 🥰🥰😝😝😝" and totally don't have it and totally don't struggle with it and totallly don't want to become a art thearpist and have goals and dreams. Like bro blame the system that makes it that people with higher needs struggle, blame the system that discriminate against people with lower needs who want to do things. Blame the system in general for assuming autistic people can't do anything
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u/kenzieisonline 5d ago edited 5d ago
There are level one autistic people who literally would not survive without the accommodations and benefits that come with a medical diagnosis.
Choosing to forgo treatment is a valid choice for disabled and chronically ill people, however, in this setting specifically, you do not get to claim self diagnosed validity when you are choosing not to have your diagnosis validated for your own comfort and convenience and not systemic hardships.
Also for context every single RT that enters this field claims self diagnosis in the first 12 months , the smart ones keep that as an inside thought, but then there are those like you who hyper fixate on a comment that your pediatrician made to your mom when you were nine and insist that your life is just as hard as the clients that we serve and it’s disgusting
And I don’t think you’re “faking autism” I think when you make the choice not be medically diagnosed you cannot use your lived experience or reference that self diagnosis in your professional work with high support needs autistic people
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u/FrootiLooni 5d ago
Dawg if your needing that many accomdations and benefits as a level one autistic person, your probably not a level one? Considering that's mild symptoms and just some support needed?? Also it's not just my own comfort and convenience, it is again sysmetic hardship as when you get a diagnosis several countries won't let you migrate to them or take you in. Not to mention this isn't my case, but there's literally someone in the comments saying if they got diagnosed they wouldn't get their hormones to transition. There's other systemic hardships in place besides medical ones that people like me and others have experienced and I'm not sure how you can be aware of them but yet say I'm purely doing it out of comfort and convience while acknowledging there's indeed systematic hardships is insane to me.
I see, so did you self diagnose then 💀💀. Cause if you did and your bringing this point up to argue kinda implies it and makes you a hypocrite since you work with high needs support children and surely must mean your "disgusting"??? Also I'm not hyperfixating on a comment, I thought initially we were just having a debate but with how snarky and nasty you turned it's at this point a argument. Also I don't parade around my work place that I'm self diagnose, I mentioned it in my interview to say I understand the struggles and that was that. And again get it right it was school officials, IEP testing, and pediatricians, and throughout my childhood. Stop insisting that it was a one time thing to fit your narrative, and again I never said my life is as hard as high support needs patients. However because of my Autism/ADHD (I am diagnosed with ADHD), it does make my life harder then the nuerotypical person even if I'm not experiencing the same exact hardships or challenges as high support people do.
I meannnn you don't think or say it but with the way your acting esp with the "tee hee I have ASD but I don't wanna get diagnosed to move to Europe" comment you might as well come out and say it. Like I never said I spoke for all autistic people and I wouldn't claim I do, and I don't even reference it really in my line of work. I don't talk about my disabilities at work cause it doesn't have anything to dow with the job (unless in this comments case it does).
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u/kenzieisonline 5d ago
Oh honey……
1) “if you need that much support you’re not a level one” is an absolutely wild thing for little miss doctor buzz feed quiz to say, Yikes.
2) yes, people with gender dysphoria and other marginalized groups have a lot to consider when it comes to their medical records. Again I speaking to a very specific group: people who work in medical asd services and who are publicly identifying as autistic based on self diagnosis. This is a very specific setting and population. One that you are a part of.
3) if you just consider yourself autistic and do not advertise it at work, then no harm no foul. My thing is if you’re not going to validate your self diagnosis with a medical one, you don’t get to cite said “diagnosis” in a medical/service context.
4) I have several medically diagnosed conditions and my daughter is disabled, but to young for any “label” so I am intimately familiar with the spectrum of disability and the intricacies of the medical model of disability.
If you are picking and choosing what aspects said your disability affect you, all while having the knowledge skills and ability to navigate medical diagnosis, I think it’s gross. We can agree to disagree but every comment you leave really solidifies my opinion more
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u/FrootiLooni 2d ago
You're full of shit, have no idea what you're talking about, have no idea who I am, what I've been through, what my mom went through, and what the Dr's told her. They did diagnose me! So fuck off!
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u/SandiRHo 6d ago
I’m just gonna share my own experience and not comment about the article:
I had a birth injury that gave me delays in speech and some sensory problems. I did tons of speech therapy and OT for a year or so and then I was okay. The practitioners told my mother that I may get symptoms when I go through puberty. I was fine at the beginning of puberty and then experienced severe psychological abuse from a teacher. Naturally, that affected me greatly. I became depressed and anxious. I was diagnosed accordingly. Convenient timing. I was kind of awkward throughout my life and more introverted, but I had friends at school and never had an IEP. Because of my awkwardness, my mother pushed for an autism diagnosis. I sat on a psychiatrist’s couch and answered questions, feeling pressure from the people in the room and being scared of a ‘wrong’ answer making my mom mad. I was told I had ‘Aspergers’ and my mother became an ‘autism mom’. I told myself the label made sense for me. I started making things fit in a “when you have a hammer, everything is a nail” kind of way. But when I had to go to a support group for autistic people, I very quickly realized I didn’t belong. I felt out of place and anxious.
Years later, I asked several more therapists and psychiatrists and all of them have said I am not autistic. But having that incorrect diagnosis affected me greatly and made me feel so unsure of myself. You may think I’m making an argument against medical diagnosis, but my argument is self diagnosis (and my mother’s beliefs) pushed me to believe I had something I didn’t. And giving my specific answers to a medical professional only affirmed my confirmation bias.
I worry about those who self-diagnose because many times they don’t rule out other conditions. They also take things they see online as true when in reality lots of fake stuff is attributed to autism. I think we as a society need to be okay with folks existing across the spectrum, not just of autism, but of life itself. Some folks are just particularly unique, some folks are just talkative, some folks are just not interested in touch. It doesn’t make them autistic. So many folks want to believe something so bad they’ll literally force themselves into an arbitrary mold and say “Look! This applies to me!” meanwhile I realized my diagnosis was wrong and I begged to get out.
To be clear, I’m not saying that wondering something about yourself is bad. I think it’s healthy to explore yourself and ponder stuff. And if you think you should seek out a medical opinion, I encourage it. The questions I pose are, do you think this diagnosis is true or do you want this diagnosis to be true? Why do you feel whatever way you answered the former question?
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u/SevereAspect4499 Early Intervention 5d ago
This exactly! To add: I was diagnosed late in life. As a child, ADD and Autism were mentioned in my presence by adults in a WTF is wrong with her way, but dismissed because "girls don't get ADD (or autism)." (This was the 80s/90s so ADD was the name for inattentive ADHD and girls were not regularly diagnosed with ADD or autism unless severe/high needs.) pretty much my childhood and teenage years were filled with adults trying to figure out what was wrong with me. You as an adult I started working with children first in early childhood education then elementary education. I wanted to be a teacher but when people found out that I was really really good with special needs children they got thrust on to me and at first I didn't want to do it, but then I realized yeah I'm good at this so I started dedicating my life to children with IEPs and special needs.. I never saw anything in common between myself and the children. I was going through getting my bachelor's in education while working summers at a daycare. Big Bang Theory was just starting to become popular and I got compared to Sheldon a lot! Then in one of my education classes with the teacher used Sheldon as an example of an adult and autism which but the idea into my brain. It took 10 years of me thinking about it and researching it and talking to my husband and him thinking and researching and both of us keeping quiet about our suspicions for the most part. I confided in two people, one looked at me and said yes obviously you are and the other was not sure. Still I kept quite about it as people around me were publicly sharing their self-diagnosis. Finally after about 10 years and a career change (I realized I could not work in a school without burning out so I became a speech language pathologist instead), I had someone who I worked with randomly bring it up. It was my last day working in a speech therapy clinic before I started grad school. One of the clinic assistants started complimenting how I was able to change my mask depending on the parent I was talking to and how it made it easier for me to relate with clients and other things. Everything she was commenting on were the specific traits that my husband and I suspected were autism in me. We ended up initiating the process for an evaluation for me. It took a year and a half and we paid out of pocket and it was a long extensive process with multiple appointments and a lot of tears and meltdowns. I was officially diagnosed about halfway through grad school. I started disclosing to trusted professors, over of whom encouraged me to get accommodations. My reply was literally that I went to my whole life without accommodations and that I don't know how much the accommodations would actually help me. She convinced me to give it a shot and my accommodations were to basically have things in writing and alternate testing in the test center so that I could avoid the hundreds of people both inside and outside of the testing center which caused me spikes and anxiety every single time I had to take a test. The everything written everything did not benefit as much as I thought it would simply because I was so used to already accommodating myself that it didn't matter. Stop being able to do my testing outside of the test center was amazing! I stopped having panic attacks on a weekly basis with that one. My official diagnosis also helped me realize that there are some work environments that I definitely do better in than others. When I graduated I went back to working in a clinic but I started burning out again. Not as bad as when I worked at a school, but still annoying. I got official accommodations put in a place at the clinic and it helped a little but I realized that several years prior to my diagnosis when I worked in a home health setting I didn't have to deal with all of the things that were causing anxiety and burnout. So I left the clinic and I started working in early intervention and home health. I have been doing that now for one year and I have not had any signs of burnout or any autistic meltdown episodes due to work. My whole point with this is that if you suspect autism in yourself, it's worth it to go for the official diagnosis. I am obviously very low support needs, but those needs are still there. Even when I have official accommodations in place, sometimes they are not enough. I am lucky enough that I was able to figure out what does work for me. I also see people who publicly announced their self diagnosis and I see them do with ease things that I know are not possible for me. Maybe they struggle in other ways. I honestly don't know. But what I do know is this was a fight for me to get to where I am and there are days when I feel like another person's self diagnosis cheapens everything I had to work for for mine. (I'm thinking of two specific people right now who get sympathy and attention for their "autism" while I get nothing but mocked by the same people for my awkwardness and the way I phrase things, both signs of my autism.)
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u/athesomekh 6d ago
Sorry, but… Is it not a widely repeated point by autistic advocates that the diagnostic criteria is biased? It’s an ongoing point of contention that the criteria for diagnosing autism is already inherently flawed and incomplete. One major point I hear often is that the diagnostic criteria of autism is that it was based on studies performed predominantly on young white boys — meaning that adults with autism, people of color with autism, and girls with autism go completely undetected all the time.
“The diagnostic criteria doesn’t align with self report” doesn’t mean the self report is inherently less valuable. The diagnostic criteria is not word-of-god. We need to study autism more and its expression, because the diagnostic criteria itself is far too narrow and based on an incredibly small demographic.
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u/dragonsteel33 6d ago
The diagnostic criteria is the “word of god” in a sense because all psychiatric diagnoses are constructs that are assigned based on the observations of the diagnostician. There can be correlations with brain structure or genetics, but these are not (and cannot) be used to assign a psychiatric diagnosis. You can critique the construction of the diagnosis, and there’s certainly a lot to critique with ASD, but it’s not like there can ever be such a thing as “real” autism in the way there’s “real” pancreatic cancer
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u/athesomekh 6d ago
“Word of god” here means it is infallible or cannot be changed. As with any scientific study, it can and should evolve with new information — that’s why we call things theory. If you read the linked article, 70% of participants were given a formal diagnosis through this study. If 70% of your self-diagnosed group reports symptoms that do not align with the known criteria, but are then assessed for a formal diagnosis, to me that sounds like the known criteria fails to account for some symptoms.
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u/book_of_black_dreams 5d ago
While it’s true that the DSM isn’t infallible, why do you think we should err on the side of non experts who believe that any diagnostic criteria at all is “gatekeeping”
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u/athesomekh 5d ago
No one said to get rid of the diagnostic criteria, so I don’t know where you pulled that from. That statement aside, if 70% of those people still correctly identified autism outside of the currently recognized symptoms, maybe we should take them a little more seriously.
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u/dragonsteel33 5d ago edited 5d ago
If I’m reading the study correctly, those 70% weren’t from the group that was really of interest — they were self-reporters who applied for the in-person portion of the study and received a diagnosis through administration of the ADOS as part of the study screening process. All this really demonstrates is that people can self-diagnose correctly, and that they did not receive diagnoses as children for various reasons.
What the researchers were trying to determine is if self-reported autists responding to an online research invitation had similar cognitive profiles to people who received a formal diagnosis of autism, to test whether this demographic was a statistically reliable stand-in in research for people who have been diagnosied with ASD. The result was mostly “no, they don’t.” But this group was never administered a formal diagnostic procedure as part of the study.
The other problem is that using the 70% to say “the diagnostic criteria doesn’t pick people up” is not really a meaningful conclusion, because it doesn’t say anything about why this is happening. Demographics are certainly part of it. Disciplinary concerns are another — a kid who might technically qualify for an ASD diagnosis but doesn’t present a problem to parents or teachers is not even giong to be on the radar. What counts under autism as a category has also massively expanded over the past few decades from when the study participants were young children, when the vast majority of diagnoses are given
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u/taw5059 6d ago
An incredibly small demographic? The number of people diagnosed with autism (by a doctor) is significantly growing. I agree with your point that the diagnosis criteria is flawed. But I think its not specific enough and allows for over-diagnosis (whats adhd vs autism vs anxiety vs bi polar, etc). Help me understand your point more
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u/athesomekh 6d ago
“Small demographic” meaning that the group (while large in number) the framework is based off of shares most of their qualities. Studies show that autism expresses itself very differently between boys and girls, between white children and black children, between English speakers and non-English speakers, between poor children and middle class children, etc.
This isn’t necessarily an autism exclusive issue — if you’ve ever attended an APA conference, a lot of speakers mention this is an issue with PTSD, ADHD, DID, OCD, and more. It wasn’t until 2008-2010 that most people had insurance that covered mental health care, so most people with mental health disorders simply did not get assessed at all. While exceptions existed, the majority of people we saw in mental health fields were white, male, and middle class (or above); thus, our diagnostic frameworks are largely based on how symptoms present in that specific group — and therefore people outside those groups often fall short of meeting the formal criteria.
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u/book_of_black_dreams 5d ago
Autism doesn’t look much different in girls - they are just socially conditioned to put more effort into social interaction. It’s still the same damn thing
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u/athesomekh 6d ago
Sorry to double reply also (about to afk), but it’s also worth considering our outlook on “over-diagnosis”. If you look at studies that show increases in diagnosis, you’ll notice that in every single one of them, the uptick in diagnosis occurs around 2008-2010. Some studies blame social media, but it’s important to look at more obvious social factors. For example: private insurers didn’t have to cover mental health care until parity was legally required in 2008. The ACA then required mental health care to be even more broadly covered in 2010.
When people can’t afford mental health assessments, they don’t go get them. Insurance parity expansions meant people could afford assessments — and more shifts since then have also increased our number of available clinicians, point-blank. Diagnosis isn’t growing because there’s more autism. It’s growing because we have more coverage.
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u/taw5059 5d ago
Thanks for the insight! I didnt realize all of that. My follow up is if we know theres more to Autism than the DSM offers, then why don't they update the diagnostic criteria?
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u/willworkfor-avocados 5d ago
Not the person you are replying to, but the answer is that diagnostic criteria are updated with publication of the DSM (in the US) and ICD-CM (internationally), among others. These diagnostic manuals are massive, attempting to contain “all” psychiatric disorders and take years to update as they cull tons of research. So the diagnostic criteria are updated, and vary by region/location, it just comes at a delay while we wait for research to come to those conclusions and be repeated for validity. The DSM 5 was updated in 2013 and 2022, and DSM 6 is supposed to better align with ICD-10-CM (which is updated annually). The DSM 6 publication release date is not yet known I don’t believe, but will likely come out in the next 5 or so years.
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u/athesomekh 5d ago
Good question 😂 the answer I have for you would be uh.... go to an APA conference sometime, even if you just attend panels virtually. The DSM-VI has been in progress for a long while (and trust me, leaders in ABA and autism are the most excited about it out of everyone), but the fun thing about the APA is that a lot of experts all have a lot of opinions.
The other difficult thing about writing the DSM-VI is that the DSM is a prescriptive manual, but not a descriptive one, meaning it isn't actually a necessary book in a world without insurance companies. The DSM-V is largely used to justify insurance claims more than it is used to develop treatment plans. Modifying the DSM-VI to be more inclusive in its diagnostic criteria, while more accurate, might result in mass claim denials if insurers decide that these changes mean a disorder no longer necessitates treatment.
Does it suck? Absolutely. Nobody hates insurance like the people working on the DSM revisions. Unfortunately, insurance companies somehow have the authority (without being informed at all about the actual medical side of things) to determine who is and who isn't worthy of being treated. The DSM, even as it is now, is largely exaggerated to appease insurers and get claims approved.
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u/book_of_black_dreams 5d ago
The DSM-6 isn’t in progress at all. Idk where you got that misinformation
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u/athesomekh 5d ago
I’ve been to multiple APA conferences, where speakers discuss having been working on drafts of it since even before the DSM-V-TR was released. There are just a ridiculous number of people who contribute to DSM revisions so no release date can be given.
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u/SignificantRing4766 6d ago
My lived experience says this is an old issue and not an issue anymore atleast in the US. My child’s old autism school was nearly 50/50 male/female with lots of students of color. Her old ABA practice had tons of female clients. Every autism event or group I go to is filled with autistic girls and people of color. Maybe in the 90’s this point was valid, but in most areas I don’t think this is an issue anymore. I do acknowledge I’m speaking from a US centric POV and it might be an issue in other countries.
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u/athesomekh 6d ago
It’s regional, I think. Some clinicians have adjusted their diagnostic framework in more progressive areas, but other areas still have a lack. When I worked direct, families of the black clients I worked with would talk about how it took several assessments and incorrect diagnoses to actually receive an autism diagnosis (most of the time the first pass resulted in being told their child had oppositional defiant disorder instead). The clinics I’ve worked in definitely also had a lot more boys than girls, and on average the girls were diagnosed closer to 7+ years, while the boys were diagnosed as early as 2.
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u/book_of_black_dreams 5d ago
That’s not a problem with the actual criteria, that’s a problem with the way clinics are applying criteria. Many APA members who worked on DSM-5 were researchers who focused on autism in women.
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u/krpink 5d ago
Curious if you have updated stats on that. I’ve worked in the field for 20 years. 10 years ago, there were definitely significant more boys. I work across 5 different states throughout the country. Now, I see more races than ever before. In fact, probably less white boys than anything else. I probably have worked with every race imaginable. (Which I like to tell certain people who claim wild theories about asd).
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u/athesomekh 5d ago
Not sure if there's been a study recently on demographic statistics. I know that it has become better, recently, but when I was direct I heard commonly from parents of black clients that it took several misdiagnoses before getting an autism diagnosis (usually ODD). The boys in the clinics I worked in also were, on average, much younger than the girls also. I saw male clients average around 2-10 years old, while the girls in the clinic weren't diagnosed until they were much older (about 7 for the youngest, and some up to 20 and on the cusp of aging out).
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u/krpink 5d ago
Interesting that white children are now being diagnosed later than other races. From this study, Asian children were getting diagnosed the earliest.
Going to look up some new studies on gender now
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u/athesomekh 5d ago
Knowing how hardass Asian immigrant parents are… honestly actually am not surprised by that number 😭
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u/onechill BCBA 6d ago
Did yall read the article? I would point out some flaws. Each comparison group had ~n=50, not exactly statistically powerful. I also see no mention of how the online report groups self-diagnosed. They do show for both online groups there is only about a 2% report of clinical diagnosis, but even their in person group had 70% of participants diagnosed through the study.
The rest of the measures, I am bit of a skeptic to see if there is any value in them outside of showing some statistical difference on average between them. I'm sure many of my diagnosed clients would have similar variance in performance on ToM or social tasks. I've seen plenty of diagnosed autistic kids that are socially butterflies and plenty that aren't.
I think we should approach this phenomenon with caution. I know I've met a few self dx people that I deeply question. However self diagnosis has helped plenty of people find some peace in their life.
I think the system we have is good in theory, but access clearly needs to be expanded for clinical dx. I'm all for self dx when people are trying to better understand themselves but having clinical dx being how we determine who qualifies for services.
This study hardly discredit self dx and the headline of the magazine article (not the study itself) is misleading.
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u/taw5059 6d ago
Just for my own learning, why a self diagnosis vs seeing a doctor to get an diagnosis from a doctor? I don't understand the self-diagnosis process enough, and see this as an opportunity to learn if one is willing.
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u/SiPhoenix RBT 6d ago
I mean, if your only goal is building habits and helping yourself, then a self-diagnosis is not necessarily harmful.
But if you're going to be telling other people that you have it or if you're going to seek some type of intervention from others, then seeking an actual diagnosis before doing so is important.
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u/taw5059 6d ago
Do you need a diagnosis (self or from a doctor) to help yourself? You can hire a personal coach or see a counselor fairly easily.
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u/SiPhoenix RBT 6d ago
You don't, but understanding that you relate to other people that have autism means that you can look up resources that other people that have autism have found useful and possibly make use of research on austim/adhd that may apply to yourself.
On the flip side, it's important to not tell other people you have autism without an actual diagnosis because lots of people doing so can over time change the meaning of the term to the point it not useful.
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u/taw5059 6d ago
I think thats putting too much on a label to be honest. I can relate to my clients, and some of their aversions, and I don't have a diagnosis. The science isn't made for one specific diagnosis. So if your suggesting evidence based resources to help you, then you can practice those things regardless.
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u/SiPhoenix RBT 6d ago
Right, someone can, but until they have the idea to start looking or searching based on that label, they may not find the same advice or resources.
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u/grmrsan BCBA 6d ago
Money mostly. I don't see a lot of point in paying for a diagnosis when there's nothing that can be done about it at this point, (almostb59 and very high functioning) and until recently, would have negatively affected me at work.
Now, I am going to someone to get it formalized only because I am in a job now where the ADHD part simply can't be ignored anymore.
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u/taw5059 6d ago
I am not sure I understand the point of getting a diagnosis if your not interested in treatment. No matter the age, you can still treat the symptoms of Autism in some capacity (counseling, coaching, self-help books, etc)
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u/athesomekh 5d ago
The same reason people join subreddits for ABA, or political stances, or why they call themselves artists or dog owners or parents. We don’t need a name for things. But we want one, because it helps us find people like us who we can build community with and find applicable resources towards.
Additionally, I could describe myself as “unfocused”, “unusually tired”, and “overly detail-oriented”. I would also get help made for people who share these traits that does not apply, like “just establish a routine” or “try vitamins”. I have ADHD. I need ADHD specific advice because my brain does not work the same way everyone else’s does. It’s not going to be specific without the label.
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u/taw5059 5d ago
I have ADHD too. Diagnosed when I was 10 years old. I guess that is where I am not understanding. I never looked at the ADHD community for help, because everyones experience is different. I take an ACT approach to keep me focused and engaged. I use behavior momentum by doing tasks I find easier/enjoyable first and then move to other tasks because that works really well for my task initiation. I don't want someone elses perspective on how their brain works. Sometimes I can agree with them. But like everything theres a spectrum and what works for one may not work for the other. Since this is an ABA group (normally I wouldnt say this because its more to explain than its worth) I use my skills to come up with my own plans. No one knows me better than me. And sure one could say not everyone is a BCBA or even an RBT. That is true. But i was coming up with my own strategies since 10. Its honestly why I became a BCBA.
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u/athesomekh 5d ago
I think it's easier to see self-treatment of symptoms as being much easier from inside of the clinical world, honestly. Your examples, like behavior momentum or the ACT approach, are available to you because you are in the field, and moreover because you are interested. Outside of the clinical world, most people's understanding of non-specific interventions start and end at eating better, taking vitamins, exercising, and self-care. If not for a diagnosis, many and more people would have no idea where to even begin (or worse, when common interventions fail, assume that they are just fundamentally broken as individuals).
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u/taw5059 5d ago
Also, respectfully, you missed the part where I said I have been figuring out what works for me since I was 10. If the goal is to be successful, happy, etc. then you owe it to yourself to learn the skills necessary to be those things. That takes self-monitoring and figuring it out for yourself. Lots of trial and error. I barely passed grade school some years. But I have a masters +20 graduate credits, and doing what works for me. I get concerned, at times, when people seek others to find what works for them. Sure collaboration and resource sharing can be helpful. But I don't see a need for a community. If you struggle with time management, for example, theres a lot of great books and systems out there to learn that. Just google resources for time management. My diagnosis may have contributed to the lack of skill set, but the way to learn it is going to be the same. And it doesnt require me to ask a fellow ADHD person.
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u/puppiesnbunnies 6d ago
This just in: pop-psych articles AREN’T valid?! 🙄