AutChat, an amazing group of autistic people on Twitter, bonded together to create a Safe Space for other Aspergian/autistic and similarly neurodivergent people. (Self-diagnosed/discovered are perfectly welcome, as are similarly neurodivergent people, or people who think they may be on the spectrum but aren’t completely certain.) It’s a very open, caring, and supportive group.
They’re primarily Twitter-based (@autchatmods), but they also have a website and a Facebook page. They host weekly discussions on different topics pertaining to the autism spectrum community and autistic people.
For each discussion, they post a “Question #0” in which each participant is invited to introduce themselves and share/disclose any information they like, followed by four or five questions about the topic at hand.
This past week, the topic was therapy – whether conventional counseling/psychotherapy, occupational therapy, or other autism spectrum-specific therapies (good or bad). And their questions were:
- Have you had therapy as an adult? What kind(s)?
- What kinds of issues were you seeking help with?
- What did you learn from therapy that was useful?
- What could have been done differently or better?
- Any advice for other neurodivergent people who are considering a similar therapy or therapies?
(See how cool they are? I just love this group!)
Participation is completely voluntary and non-committal. You don’t have to get your name on a list or sign up. When you answer the questions via Twitter, you can do so at your own convenience; I usually tweet my answers after the fact. To participate effectively, just remember to add the “#autchat” hashtag after your answer so that anyone combing that hashtag will see it. That’s pretty much it! (Or at least, it seems that way to me; I might be missing something, though!)
I’ve sought therapy before, mostly the conventional psychotherapy kind. My issues were the usual long-standing issues that I’ve had ebbing and flowing throughout most of my life – anxiety, grief, even depression.
I’ve seen multiple counselors, beginning with pediatric therapists around age seven until I was 10, followed by a break, then again at age 14 until age 16, and then at age 34 until age 38.
Finding out that I “have” Asperger’s/autism changed everything for me.
Suddenly I was plunged (eagerly) into a whole different world.
Suddenly I realized that my brain worked differently. I realized that what might work for others may not work so well for me. I had different needs. I needed different understanding. I needed different strategies. The usual “and how do you feel about that?” was not going to work, nor was simply “checking my self-talk”. “Old tapes” were not going to erase themselves as easily, and it wasn’t as simple as “willpower” and “positive affirmations”. I’m not saying that that approach and those strategies don’t help; I’m just saying that I came to realize that I needed more.
I’ve heard a lot–and experienced some–regarding the horror stories (or at least, stories without happy endings) that people on the Asperger’s/autism spectrum have gone through.
On the one hand, those of us who need help, know that we need help.
On the other, wading through directory listings, online or elsewhere, can be a daunting, confusing, and cynical task.
If we’ve had a bad therapy experience before, we might be gritting our teeth and mustering the courage to try again (usually out of necessity, because something in our lives has reached a breaking point), but we fear the prospect of getting tangled up with another Bad Apple therapist. Or perhaps the therapist wasn’t horrible, per se, but lacked insight or perspective, or maybe they failed to connect with us, or maybe their advice wasn’t tangible enough to be useful. Maybe they spoke in vague concepts, where we needed a practical step-by-step to-do-list.
So when I came across that last question: “Any advice for other neurodivergent people who are considering a similar therapy or therapies?”, I suddenly had a lot to say. How I answered that question piqued the interest of several other Twitter-mates, including someone who asked if I had this information written somewhere. I didn’t (yet), but that person (bowing in gratitude to them) inspired me to write it.
The wheels began to turn, gearing up to answer the question: “how do I, as a person on the Asperger’s/autism spectrum, find a suitable therapist?”
This particular “lot to say” that I refer to is strictly my own opinion, written from my own perspective, in my own situation, considering my own needs. But even though I can only speak for myself, I frequently find that I’m not alone, so I’ll share my thoughts about how to find a good therapist, with the goal and hope of helping others.
Tip #1 – To ease stress, email, or have someone else you trust do the calling for you. I know that this doesn’t have anything to do with the therapist themselves; it mostly involves helping ourselves get out of our own way. Because sometimes, just being faced with the idea of having to make all those phone calls can present a pretty lofty hurdle. Having someone close to us do the legwork might take some of the pressure off and diffuse the anxiety, like releasing a pressure valve.
Tip #2 – When researching various directory listings online, when you come across a therapist who catches your eye, check out their website, if they have one, and read through it as thoroughly as you can. That’ll give you a feel for what they’re all about, their philosophy (which is important), and it might give you some clues about the strategies they use and the schools of thought to which they subscribe. It’s important to find someone who says things that resonate with you.
Tip #3 – When you make (or someone close to you makes) the phone call to the therapist’s office, have at least a few questions prepared, especially if their website didn’t address them. These questions can be whatever you want them to be, whatever is important to you. The rest of the tips, except for the last one, focus on questions that I would consider asking–information that I would want to know before proceeding with them.
Tip #4 – It might be best if they have experience with adults on the spectrum. I say “might be”, because one of my best counselors ever was one of my first. Because he worked mostly with adults and possibly teenagers, my parents began to see him first; I didn’t see him until I was 14. But my parents got a lot of mileage from their sessions with him, and then when I joined in, so did I. He was neurotypical, and it would be 25 years before the possibility that I might be on the spectrum would even be conceived, but his insight was spot-on, his perspective was refreshing, his mind was open, and his strategies were practical.
That being said, he’s a rare gem, and he’s retired now. So, armed with my newfound Asperger’s discovery, and feeling my mask and my coping strategies for dealing with the world beginning to slide, it has become more important to me that any counselor I work with from here on have plenty of experience with adults–not just children–on the Asperger’s/autism spectrum.
Counselors/therapists with experience in this area are fewer and further between, and they may be tough to come by. After all, the recognition that we exist is a relatively new (or at least, freshly rediscovered) phenomenon. But I have the feeling it might be worth the effort; after all, we’re wired differently (!). We sense and perceive the world differently, we have different challenges and struggles (as opposed to neurotypical people), we have different emotional expression, we think (and sometimes talk) differently, and we “present” differently when we have problems (i.e., depression might look outwardly different in a person on the Asperger’s/autism spectrum than it might look in a neurotypical person).
Tip #5 – It’s crucial that the counselor/therapist looks at Asperger’s/autism as a difference, not necessarily a pathology. If they look at it as a pathology, they’re more likely to bow down to the medical model and try to “fix” us, usually by suppressing our true selves further, and measuring our progress by neurotypical standards.
I had been seeing a counselor periodically, and I had a few sessions with him after my self-discovery that I was more than likely on the spectrum. After my “before” and “after” spectrum discovery lines had been drawn in the sand, he began to nod approvingly and praise me for “making better eye contact today”. Although he’s a nice guy, a great listener, and very compassionate, I found his neurotypical yardstick unsettling and unproductive.
I think that finding someone with a more progressive view of the autism spectrum and the people on it, would serve us much better. They’re more likely to work with our characteristics, rather than try to snuff them out. They’re more likely to recognize the strengths, benefits, and positive attributes of our Asperger’s/autism-ness, and accept us for who we are, utilizing what we already have in place, to help us.
Tip #6 – It’s also important to find a professional who recognizes and respects our challenges and disabilities. We all know that while being Aspergian/autistic can be interesting, amusing, advantageous, or even fun at times, it’s also not rainbows and picnics all the time. We have our difficulties, challenges, and disabilities, too. The last thing we need is to be minimized and marginalized by the very people we’re relying on (and often, paying plenty) to help us. We don’t need to be belittled, dismissed, written off, or downplayed. Just as we need our strengths recognized, we need our difficulties to be taken seriously as well.
Tip #7 – I personally prefer a therapist/counselor who stays current on new information. The scientific community is hard at work, spitting out research papers and new tidbits of information all the time, adding to the collective info-cloud constantly. We now know that vaccines don’t cause autism, nor do “refrigerator mothers”, thanks to the scientific community. Rather than being thrown away as “feeble-minded”, “mentally ill”, or “violent”, we know that Asperger’s/autism is a neurodevelopmental condition, as opposed to a mental illness.
But it doesn’t stop with research papers…
Tip #8 – I also think it’s very encouraging (and for me, relatively necessary) that they are also familiar with–and have actually read–books by Temple Grandin, Steve Silberman, and other cutting-edge books written from a progressive Autism Acceptance angle. Dr. Grandin herself says that “the world needs all kinds” and has some encouraging things to say about the Asperger’s/autism spectrum. Steve Silberman delves deeply into the history and development of the autism diagnosis and (I’m about 2/3 of the way through the book) has hinted at the concept of neurodiversity.
I think that if a counselor isn’t familiar with at least these two authors (or others similar to them, like Rudy Simone and/or Tania Marshall), then they’re probably clueless. That lack of awareness would be a red flag for me to keep looking.
Tip #9 – Ideal but not required (for me) is that they have an extensive intake questionnaire, or detailed initial consultation. The more they ask, the more I can share, and the more I can share, the more information they have at their fingertips to help me.
Tip #10 – Crucial for many of us (especially in the US) is that they respect any preference you might have for remaining outside of the computer system. In order to do this, insurance coverage can’t be used; you’ll need to pay privately and not get insurance involved at all (in fact, don’t even notify your insurance company, or they will almost assuredly make note of it in their database). I realize that this doesn’t apply to everybody; different regions/nations have different healthcare systems and financial situations. Some people have the option–and financial means–to seek private practitioners, while others don’t. I’m disadvantaged in that I live in the US where there is no national healthcare system to help with costs, but I’m privileged in that I’m able to remain outside the system and “off the books” (for the most part). Covering costs myself, for me, is a little iffier; sometimes I have the funds, but many times I don’t.
It’s also true that privacy laws in this country are rather strict. But they do get a little interesting in regards to mental health, which counseling/therapy is considered. Some of the privacy regulations are stricter, while some can become effectively looser (and may become even more so if the federal Congress decides to proceed with the legislation I wrote about this last fall, which has been effectively tabled/stalled for now; although my post was written regarding diagnosis, the legislation actually pertains to any mental health records, including ongoing counseling post-diagnosis).
But anyway, the best therapists on my list are extremely understanding and more than happy to respect and accommodate my preference to remain anonymous. The main point here is their reaction to my request; the best personality fit (for me) is one who doesn’t bat an eye. This means they’ve heard the request before (meaning they actually do have experience), they think independently (without merely following the masses), and they don’t judge or second-guess you (meaning you’re less likely to experience gaslighting).
Tip #11 – I might tend to prefer someone a bit younger, without the “there, there, you’re just another over sensitive female” attitude that prevails in the conventional medical establishment.
Age obviously isn’t everything, of course. Even Hans Asperger himself, from what I’ve been reading, loved his “little professors” and there were several facilities that have popped up (and unfortunately, down) through the decades that have actually been quite progressive. Seeing a counselor of this mindset and from this time period, if it were possible, would be awesome.
But many of the older counselors (anyone above, say, age 50-ish?) might be more likely to be older-fashioned; after all, they were likely schooled at a time when autism and schizophrenia were joined at the diagnostic hip and blamed on the person’s mother.
So, if the therapist I’m considering is indeed older, I might (fairly or not) hold them to a little extra scrutiny; they will need to be extra-progressive in their approach.
Tip #12 – I also tend to gravitate toward those who think independently. Someone who doesn’t just go by what the authorities establish, without question – because that mindset can be dangerous (just Google “just following orders” and you’ll see what I mean, if you don’t already know; I might come across as a little paranoid, but consider what has been–and is still being–done to people on the Asperger’s/autism spectrum in the name of “therapy”!).
Conspiracy-esque theories aside, it simply makes more logical sense (to me) to be seen by someone who thinks outside the box–or perhaps, as one blog-writer (link to their blog) so eloquently puts it, thinks in a different box altogether. After all, we’re not wired in the same way as the average bear. Having someone on your side with a little imagination and ingenuity can be a definite plus.
Tip #13 – Whatever you do, don’t settle for someone who doesn’t resonate with you or isn’t helping you effectively. Of course, when starting with a new therapist, the first (three, four, five?) sessions will be mostly you talking (prompted or not by questions from them), as they gather information and background from you. After all, you’re meeting each other for the first time and they’re familiarizing themselves with your backstory, your current situation, and even You yourself. So if it seems like all they do is nod and write for the first few sessions, that’s OK. After the information-gathering is mostly complete, however, it’s time for the rubber to meet the road.
When looking for a therapist, be choosy. When deciding whether to continue, be even choosier. In my opinion (others may differ) look for these red flags:
A) Ending a session prematurely – During a session, you might dive deep into a painful memory; the therapist should never look up at the clock, realize the time is up, and say, “well, I hate to leave you like this, but it’s Time.” They should either extend the session (asking you first), or, be cognizant enough to decide whether or not the subject should even be brought up, given the amount of session time remaining.
B) Attempting to minimize your situation – I once talked to someone who had been in a serious car wreck, with permanent injuries, and the counselor showed them a medication he was taking and said, “well, I have to take these for the rest of my life.” Life is not a contest, not to mention a therapeutic session. A counselor should never try to marginalize you or one-up you.
C) More than one session in which you walk out feeling worse than you walked in – Sure, it’s possible–and common!–to feel shaken up or unsteady/unstable/vulnerable after a “meaty” session in which you’ve done some heavy work or made a painful realization or made a significant breakthrough (especially one that was very emotional). Or maybe you feel a need to cocoon or hibernate, away from people for a while, while you ponder the session and regain your mental/emotional footing. That’s perfectly OK.
The kind of “feeling worse” I’m referring to is the type that is underscored by a coexisting feeling of uselessness or un/counter-productivity. The kind where you shrug and say, “well that was a waste of my time.” That’s what you don’t want. That’s when it’s time to give it one more session, during which you raise these concerns with the therapist and give them a chance to give a sound explanation or kick their butt in gear, and if they fail to do either of those, then give yourself permission to cease.
Again, these are just my opinions, based on my experience, and given my own situation and preferences. Others may have something different to say, or something else to add, and I encourage them to do so in the comments if they like!
🙂
❤
oh boy, ive hit a, b, c on every single one. clueless people. i dont know if youre a sacha baron cohen fan, but “throw the shrink down the well” would be my favorite song…
one thing i (quite desperately) want to know is, who can you see that wont try to throw more chemistry at the problem? i know that psychologists dont and psychiatrists might, but what ratio (theres no solid answer to this, so im asking for a realistic mockup or an “educated guess”) of patients do psychiatrists (in the pharm-governed usa for example) actually medicate? until there is a drug to “treat” autism (and im not saying anyone would want it if there was) what are the other options?
this is not a hypothetical or philosophical question. id really like your best answer, because there arent a lot of people im comfortable asking. so if you might have an answer, please try. feel free to ask around (as a hypothetical question) and get back to me. i feel like you might be the best person to ask– humor me on that, i have lots of reasons for that assumption that you might not ever guess.
not to put pressure on you– if you cant, you just cant. i will like you just the same. great post; tops! cheers.
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Thank you so much for asking this question! (“who can you see that wont try to throw more chemistry at the problem?”) It’s an awesome one! I’ll try to answer as best I can 🙂
I’m in the US, so the mileage others get may vary, depending on where they are 🙂
I firmly believe that in most situations, chemistry (i.e., pharmaceutical drugs) are not the answer; they’re not even beneficial (again, in most situations). I think that they CAN be, especially if there is indeed an issue that can’t be solved in any other way. But for most of us with cases of anxiety, depression, irritability, etc, the problem(s) can be solved using integrative approaches. (For example, how many of us with depression have ever had our Tyrosine levels or Magnesium or B-complex vitamins tested? How many of us are also low in Copper, Iron, and Vitamin C? ALL of those nutrients (and more!) are needed to make Serotonin and Dopamine, the two brain chemicals likely to be out-of-balance in cases of depression or irritability. A deficiency of any one of those nutrients could cause a problem. Or, the nutrients might be there in the right amounts, but the brain chemicals still don’t get made, because something is acting like a set of brakes, slowing down the production process. I find Arsenic, Cadmium, and Aluminum very high in most of my clientele, and these are notorious for getting in the way of brain chemical production. The same holds true for inflammation (the chronic kind you don’t feel, but causes problems that nobody else in the medical community investigates). Or maybe there’s underlying lingerings of unresolved grief, stress, rejection, bullying, abuse, abandonment, or other trauma that needs to be worked through (that’s a process in itself – much easier said than done, but it is possible) ❤
But I realize that the above is of limited value in terms of psychotherapy/counseling/etc. Because those providers aren't trained to do that. Their state laws probably wouldn't even let them. So what do we do, and where does counseling fit in?
In terms of the US states that I've lived in, psychotherapists/counselors ("LPC, or Licensed Professional Counselor" is their designation) can not prescribe pharmaceutical medication. I'm not even sure they can make nutritional supplement recommendations (the laws may vary, I'm not sure). So most of the counselors out there aren't necessarily drug-happy; some favor a drug-free approach, while others will only work with you if you're also seeing a psychiatrist (a medical doctor/MD whose specialty is psychology/psychiatry) or your GP for meds. And there's a whole spectrum in-between, counselors who don't have an opinion either way about medication (or if they do, they don't usually disclose it). So yeah, there's a wide variety of counselors out there. Each one is very different. Personality is important. If they're closed-off or narrow-minded, or they subscribe too much to the medical model, they see you as a pathology and attempt to "convert" you to being neurotypical, usually through behavioral therapy (ick) or medication, or both. Then there are others who have a very progressive view, realizing that we are indeed "Different, Not Less" and try to work WITH us (and without drugs, unless needed for a specific reason), instead of dousing us in chemistry.
But anyway, those are just my thoughts. Lots of ways to look at–and solve/improve–some of our issues/concerns 🙂
Did I understand (and answer) your question well? Please let me know if I misinterpreted or failed to cover something you want to know. 🙂 ❤
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thats a great answer and very comprehensive (and appreciated.) a related (or reworded) question goes like this– if for some reason you are required to see a gp, how many will continue to work with a patient that is not interested in being medicated? i presume that in the vast majority of cases, an md that specializes in mental health will ultimately prescribe medication, even if they cant figure out what precise condition theyre treating.
if i had a dollar for every time someone said “well, lets try…” and to be perfectly honest, im done going that route. but if you have say a very limited supply of lpcs and mds to visit, how can you determine if your md is willing to work with you *exclusively* on other options– or does such an md even exist?
in short: how many of those people would you have to visit before you could keep one to talk to, without sampling a lot of new pharmaceuticals to keep them occupied?
and in plain english: are any of them willing to “just talk” like an lpc would? or is that simply outside the scope of what they do? (because if it is, then exepecting someone to visit one from time to time– say for insurance reasons– is essentially requiring someone to be medicated whether they require it or not. that would be extremely unfortunate for many people– most of all, people who have a condition that is not really something to treat with medicine.)
of course if we werent living in the dark ages, this question would not be so important. this is surely made worse by the dsm-v, and though i wont waste my life waiting for the day, i wish the bastard authors would get hauled in front of an ethics committee once and for all. not that it will ever happen. in a just world, it would have already.
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Awesome questions. I really like the way you think! 😊
Yeah, MDs generally don’t/won’t just talk. They’re held to a particular “standard of care”, which is a technical/legal term for “recipe cookbook”; essentially that says, “if they have this condition, prescribe these drugs”. And the drugs don’t resolve a whole lot of conditions; they just ease the symptoms (I’m talking mainly about meds for chronic conditions, not the acute emergencies). So yeah, that’s what they’ll stick to. 😕
The LPCs, on the other hand, the talking part is exactly what they do, so I recommend that avenue for actually talking through/about issues. And a good one will usually offer their insight into what’s going on, and even provide some good strategies for addressing it in our lives. Tools we can use as needed. 😊❤️
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” “if they have this condition, prescribe these drugs”. ”
if you havent heard of/cant recognize autism, just give them an anti-anxiety/ocd/mood stabilizer cocktail, and draw blood every 2 weeks to make sure youre not accidentally killing them.
heres the problem reiterated, you know:
if insurance requires you to see an md/psychiatrist in order to see an lpc, and you dont have a condition that can be treated with medicine, and your condition gets misdiagnosed as things you dont have–
then youre being required to get prescriptions you dont need that cant help.
so i guess if thats all inevitable, then this: do you have to take these medicines in order to keep seeing them? and when can we have a historical clas-action lawsuit against these incompetent f***ing shills? in the next decade or two would be nice.
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You raise so many excellent points! 😊
I should have phrased it “patient has this symptom; therefore, prescribe this drug” 😊 Because you’re totally right; if there are no drugs for a particular condition, the MD will do one of the following:
1) dismiss the symptom as “all in your head”
2) find the closest matching symptom and write a prescription for a drug for that, even if the symptom is #5 or 6 on a list and not even the most pressing concern
3) latch onto a symptom that is there, like anxiety, and quell that symptom with a prescription
I’ve never had insurance contribute to any of our health care expenses, so I never knew they could/did require people to get a referral from a GP to see an LPC (wow!). That would be frustrating indeed 😕
I’m fairly sure that you’re not *required* to fill the prescription, per se, but if a patient doesn’t, then they could be branded as “non compliant” which could lose them proverbial credibility points. The GP might not take them as seriously.
Some GPs are getting better. Some are learning that the system sucks and it’s broken, and they’re seeing how it isn’t helping their patients. Some really do want to do right by their patients but they’re schooled in one method and don’t know what else to do, so they feel stuck. Of course, they’ll hardly ever admit this, because they’ve also been schooled on how to talk to patients and what to (and what not to) say. They don’t want to damage people’s faith in the system (although I hate to break it to them – patients aren’t stupid; patients know the system sucks and patients have lost faith in it, many did a long time ago).
Yeah, dark ages is right! We’ve come a long way (medical history is downright horrific), but in many ways, we haven’t advanced as much as many would like to think.
As a doctor myself, I find the system deplorable, which is why I started in immediately on a different, outside-the-system track the minute I graduated school 😊💪🏼❤️
But it’s not easy. Working outside of insurance is incredibly difficult and you make FAR less money. After 7 years, we still live week to week (literally). But it’s the price we pay for remaining independent and small, and specializing in what is still a new niche. But given the advantage it gives patients, it’s totally worth it. At least I can go home at night knowing I never wrote anybody off or dismissed them. And I can make time to blog a little at night or over lunch lol 😉😉💓
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It’s somewhat tied into #12, but I would expand on that to emphasize that you want someone who is familiar with and comfortable enough with the skills and practices in their toolbox that they are comfortable adapting them on the fly based on your feedback. Many of the points above are ones I used to find my current therapist and it’s the first time I’ve gotten any benefit from therapy. She’s familiar with autism in both children and adults, so has a conceptual framework into which to place the things I describe. She makes extremely good suggestions to me for the reason things impact me the way they do. They aren’t always right, but when they aren’t she moves on and adjusts. And when going through practical things, even something as simple as body scan relaxation techniques, she alters and adjusts the approach to fit my particular neurology and sensory input. That’s critical because standard practices and techniques may not work for us without some modification. I know that’s been my experience.
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Amen!! 👏🏼👏🏼👏🏼. Thank you for sharing your experience! That’s a very helpful tip indeed. If the counselor/therapist has limited tools in their toolbox, then their strategies have to work from the git-go. If those tools don’t work right away, and there aren’t very many backup tools or alternatives, then therapy will be less effective for sure. A variety is always good 😊😊
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Oh, and it’s not necessarily easy. I live in a large urban area and my research still only found a very small handful of potential therapists that met the criteria I was looking for and whose information and approaches lined up enough that I put them on the list. Fortunately, my top candidate and first attempt worked out better than I had hoped. But if you don’t live in a large city, it might be a lot harder to find anyone.
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Thank you for that caveat! This is very true as well. Even though I live in what is technically one of the largest cities in the US, finding just the right match was really difficult, and that was just for my initial evaluation! I couldn’t find anyone locally, but found 2 online, one of whom is located several states away but holds a license in my state, and will provide services via videoconference. Whew! I got lucky with a Google search one day, and just so happened to find his website. It’s really a luck of the draw, like finding a needle in a haystack. I can’t imagine how it might have gone if I lived in a rural area and/or did not have a generous internet connection 😮❤️
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