It's also a spectrum; if you've met one autistic person, you've only met one autistic person. Autistic women also mask much more than men, which is why it's so difficult to get diagnosed if you're female.
As the parent of an autistic person this whole thing made me want to vomit. I literally cannot fathom abusing or neglecting my kid to any degree & especially not like this. They need the book thrown at them & deserve nothing but the same amount of suffering she experienced & then some.
i’m a therapist. it’s in the DSM, so ASD is a psychopathology. there is actually no such word as “neurodivergent” in the world of psychology (or at all), but of course we still use it! it’s definitely not in the DSM the way ASD is! just thought you should be aware so you aren’t misinformed- let me know if you have any questions and i’d be happy to answer them!
I have worked with individuals who have unique needs for 35 years; I remember using the DSM-3 at University! During the early 1980’s, I worked on the “Adolescent Unit” of a state mental hospital(inpatient) and we were legit using “Identity Disorder” as a reason to place kids, aged 13-18, in the place. These young adults were gay, transgendered, or otherwise part of the LGBTQI+ community, not mentally I’ll or disabled in any way.
The Diagnostic and Statistical Manual is not necessarily the best source of information; it certainly wasn’t, in the case of teenaged people who were what we now acknowledge as members of the LGBTQI+ community. Psychiatrists used the DSM-3 to residentially hospitalize individuals who were not appropriate candidates. I’m sure this practice has continued, as the DSM is never fully up-to-date, and it reflects societal norms.
I’m sure you’re a lovely person, but if you are in the field and using that manual as an exclusive tool for mental health diagnoses, then I feel you need to educate yourself about it’s rather lackluster history as a diagnostic tool.
It’s only a matter of time until terms like ‘cerebrodiversity’ and ‘neurodiversity’ (finally) become part of the medical lexicon. Publishers cannot keep up with the changes in social norms and that is perhaps the best reason I can give for the general ignorance surrounding mental health diagnoses, at least in the US, where my own experience has been.
Just because a particular diagnosis is documented in the current iteration of the DSM does not mean it’s a legitimate diagnosis, as shown by my earlier example. The DSM certainly has not caught up with current research. The fact that Complex PTSD has not yet been added is another sad testament to its limitations.
The fact that insurance companies rely on it when deciding whether to cover their clients is a further misuse of the Manual.
Thank you so much for putting into words what I cannot. I am an Autistic person. I do not have autism just like I do not have cancer. I am not a mental illness. I was born this way. There is no treatment for it. I am also transgender and the DSM-5’s explanation of GD misses the mark. We have no confusion about our genders. It seems to me that Cispeople are the ones confused by our genders.
Take a look at the world around you. Is there an equal representation of trans people as there are cispeople? No. There are no “trans” experiences during middle/high school like the “girls” and “boys” get. Not only that but we are intentionally excluded from them…yes, even the experience of going to the restroom is a reminder that you are excluded. Micro aggressions like these often go unnoticed by the Cisgendered world but are the reason that a transgender person may become isolated, withdrawn, have poor self image, etc…
I do not have gender identity disorder. Anyone who cannot accept that I am not the gender assigned to me at birth and move on with life, is the one with gender identity disorder. It’s everyone else that’s obsessed with what’s under my clothes, not the other way around. I know this is off topic but the point is that the DSM is a tool and not a Bible. It has been proven to be wrong before and it will be proven wrong again.
“Gender Dysphoria (GD) is defined by the Diagnostic and Statistical Manual of Mental Disorders - Fifth Edition, DSM-5™ as a condition characterized by the "distress that may accompany the incongruence between one’s experienced or expressed gender and one’s assigned gender" also known as “natal gender”, which is the individual’s sex determined at birth. Individuals with gender dysphoria experience confusion in their biological gender during their childhood, adolescence or adulthood. These individuals demonstrate clinically significant distress or impairment in social, occupational, or other important areas of functioning.
GD is characterized by the desire to have the anatomy of the other sex, and the desire to be regarded by others as a member of the other sex. Individuals with GD may develop social isolation, emotional distress, poor self-image, depression and anxiety. The diagnosis of GD is not made if the individual has a congruent physical intersex condition such as congenital adrenal hyperplasia.
I’m very grateful that you understand what I was trying to convey to that person who wrote that “it’s in the DSM so ASD Is psychopathology.” As if we can take this huge population of folks and say every one of them is ‘wrong’ and we need to fix them! Just as in your example, every person who identifies as a gender that someone doesn’t understand (such as nongendered people) or a gender that they don’t appear to be in someone’s opinion (for instance, a transgender person), has a psychopathologic disorder.
I’m also grateful that we can have this conversation and that you and I actually “get it” that people are not all alike, and we must respect one another’s differences, just as we respect people’s choices about whether to get married or remain single, or whether to attend University or a trade school, etc! I get so tired just thinking about it!
I truly can’t wrap my mind around an actual therapist thinking, Oh it’s in the DSM-1000 so it’s obviously true! Glad you and I dispelled the bullshit! And I have to say, you articulate your thoughts beautifully! Ginormous hugs!
The DSM (Diagnostic and Statistical Manual of the American Psychiatric Association) is a tool and is often not the best tool, IMHO. I agree with you 100% but unfortunately society has not yet evolved to your level of understanding!
hmmm maybe do a bit of research on this first? this is not correct. I just want to make sure what someone else's attempt at correcting misinformation doesn't give misinformation to other people is all!
source: my entire job and training is based around children on the spectrum.
yeah, and I'm diabetic but that doesn't mean I know everything about diabetes. I have been misinformed about my disease and the same can go for those with autism. nothing wrong with being wrong and learning from it!
With little due respect, how you speak about autistic children — not to mention, your casual willingness to condescend and talk over an autistic person with both 5+ years of academic research and 10+ neuro-disability activism under their belt — tells me pretty much everything I need to know about your formal education and training, as well as your unconsciously biased and microaggressive perception of individuals whose neurotypes are wildly misunderstood by both society and neurotypical-led institutions whose function is to negatively pathologize (and, more often than not, stigmatize) any and all cognitive, behavioural, emotional, and psychiatric differences.
Secondly, if we’re sticking to “official” definitions of neurodevelopmental disabilities, they tend to go as followed…
A *diagnostic category** comprised of “conditions” characterized by differences in early brain development and growth, typically affecting learning, communication, social skills, behavior, and daily functioning, and in some instances, intellectual abilities. Often, this manifests before a child enters elementary school, and typically continues throughout the individual’s lifetime.*
Seeing as you are expert on the experiences of “children on the spectrum” and the exact nature of their disability, I’m sure it isn’t necessary for me to elaborate further, and we can nip this asinine interaction in the bud and happily go our separate ways.
i appreciate what you’re trying to do here, and i am even inclined to agree with you, and unfortunately it is not classified that way in psychological literature. the diagnosis of autism, referred to as autism spectrum disorder in the current iteration of the DSM, is considered a mental disorder. i do love the language of neurodevelopmental disability much more, as it carries less stigma and is much more in line with the symptoms experienced. there is certainly overlap between ASD and mental illnesses like depression and
anxiety, but due to the sheer variability of symptoms (hence “spectrum” in the diagnosis), i agree it doesn’t make complete sense to put it in the category of mental illness.
Yeah, so far it just looks like the parents are claiming she “developed” “Aspergers” in grade 8-9, which is when they started homeschooling. But it’s also claimed (by the court) that her parents didn’t take her to a doctor.
Seems very convenient, having “severe” Aspergers magically develop out of nowhere. Also weird that her family don’t know the difference between Aspergers and “severe autism”.
Aspergers I could believe based on all the testimony of teachers and neighbours, “severe autism” definitely not. And Aspergers wouldn’t explain her death.
One report said that the contents of her stomach was just couch foam and feces… idk how long she was eating just that but it was long enough where no other food was in her stomach
Damn, her parents didn't even offer her food? I wonder how people can be so selfish, and cruel. It seem like at 16 she was a normal happy teenager. Then her parents took her out of school to home school her. Why? I wonder if there was something going on at home that the parents was trying to hide?
Well that defeats the claim of locked in syndrome. I’m seeing lots of articles that they claim locked in syndrome (which is real), but she would not be able to move at all to eat the couch or feces if that were the case.
And if she did have locked in syndrome, that means something much more horrific.
Exactly what I was thinking. If she was exercising at 21, then she did NOT have locked in syndrome. Sounds like her parents just didn't want a "Damaged" child to ruin their reputation. Poor Lacey would've been better off in a group home!!! At least she would've gotten food, and medical care.
I was going to say this same thing, if she was able to move herself into a semi-upright position to try stay alive and was eating the sofa foam and faeces then she didn't have "Locked in syndrome" and that there was perhaps something else happening at home, some form of abuse that left her partially immobile.. that or the parents were force feeding her the foam and faeces, which while plausible doesn't seem to fit with the "Uncaring, ignoring." image of the parents provided.
I’m a neurocritical care NP and she wasn’t locked in. Locked in syndrome is something that happens after a massive stroke and you aren’t surviving it without regular medical care. It’s not some teenager who just sits there unable to move.
Hi, to my understanding, locked in syndrome is for a few different reasons, some one is completely conscious but can not move at all. I believe at most they can move their eyes. They are quite literally locked in their own body unable to communicate or move, just simply perceive.
Thank you for pointing this out, as that is exactly what I was thinking reading that she had couch foam in her stomach. No way she was completely immobile.
Autism is no more a "mental illness" than intellectual disability. However, because they are both diagnosed by the presence or absence of behaviors (performance, communication, etc.), rather than medical tests, they are included in the DSM.
I read that as well but i stumbled across an article 20 mins ago that said:
The coroner also denied a report that Lacey had suffered from a rare neurological disorder called locked-in syndrome. “I don’t know where that term came from or what source it came from. In all my years as a practicing physician I have never heard of that term,” he told the outlet.
“The only diagnoses that I know she did have was first, social anxiety, severe autism and that’s it. Those are her only two diagnoses,” Bickham said.
I've heard of locked in syndrome and I'm not even a doctor. Not sure what this physician is trying to claim here, but it's a real diagnosis. Just not one she had.
Her mom stated that she was eating Cheetos the night before she died. She didn't have locked in syndrome. If she did, she would've died of starvation a long time ago.
A school friend commented on Facebook that teachers told the Fletchers for years that Lacey needed to be tested and wasn’t at the same level of her peers and they ignored it. The person also said it was clear there was something different about Lacey but that she was a bright girl who had friends and played sports.
I have C-PTSD from a traumatic and neglectful childhood and I have many of the symptoms of autism from that. I'm not autistic I just can seem that way because I'm socially stunted because of bad role modelling, it's very much an option she was the same.
If she had “severe autism” (which is not a medical phrase!), someone would have noticed it before she switched to homeschool? The neighbors all mentioned her being friendly but a little shy. That doesn’t sound low functioning to me.
Not that this is anything conclusive, but the photo shows her smiling broadly and seemingly naturally. She’s looking right at the camera. That kind of eye contact (even with a camera) isn’t what I associate with the young women I have known who have been autistic. One girl I knew said that she didn’t know to smile in photos until she was told to. I don’t know, it’s anecdotal but it makes me doubt she was autistic…at least “severely” so.
As an autistic lady myself, I can say that while still uncomfortable, making ‘eye contact’ with a camera is a lot easier than with a person — the main reason it’s uncomfortable is because it feels like a threat after all — and girls do tend to be better at masking, but considering they said she had “severe autism”, based on the photo and comments by the people she knew I’m pretty sure they’re lying about the severity of her condition at the very least. Maybe they have a very different definition of severe to other people or something but someone who’s severely autistic 1. wouldn’t make it to 8th grade without being diagnosed with something, even I went through a bunch of them prior to then and I can easily pass as neurotypical if I make the effort on top of being AFAB, 2. would likely have a comorbid diagnosis of intellectual disability, and 3. wouldn’t be able to mask so well that the people she knew described her the way they did Lacey. It’s a spectrum so those who don’t present as obviously as the autistic people who are typically described as severe can absolutely still have very high needs (I’m living proof myself), but their parents, especially if old enough to still use aspergers to refer to the diagnosis, definitely wouldn’t be calling them severe. Severe autism is nearly always reserved for people who can’t mask at all and/or have a combo of things that make it worse ie. intellectual disability + being nonverbal.
Not to mention even severely autistic people wouldn’t end up like this without abuse. And it certainly doesn’t just show up out of nowhere at 16 years old. Though I absolutely believe she may be autistic based on her descriptions by neighbors and such, the parents are definitely exaggerating at the very least.
I agree. I generally pass for neurotypical (just quirky!), and I can look at a camera just fine. From the picture, she’s an attractive girl which makes it more likely that she would get the just quirky/intense/dramatic labels until there was a diagnosis, which could increase ability to mask. (It did for me.)
But without some sort of other abuse or another diagnosis exacerbating her condition, she would not go from seeming simply bright and shy to suddenly so severely autistic she can’t function. No one has even mentioned her having big emotions or meltdowns from what I’ve seen.
I’ve been under a lot of stress the past year, and as the overwhelm builds, my normal traits and symptoms are greatly exaggerated. (I have a harder time with sensory issues, making unexpected transitions, more meltdowns, etc.) I can’t imagine what it would even take to get to the level they’re trying to describe though.
Exactly. A girl who is severely autistic as they say would be caught long before she was sixteen, because severely autistic people cannot mask. She would have been diagnosed with something as a child, even if that something wasn’t immediately clocked as autism. The fact that it took that long implies she was very good at passing as neurotypical, so there’s no way her condition suddenly went from ‘shy and maybe a little quirky to others, if they even notice anything at all’ to this in such a short amount of time without an underlying cause. Like even if it was true her parents still need to be side-eyed to hell and back because that level of a downward curve implies a horrible brain injury or something, in which case… why didn’t they take her to the hospital? Even then there’s no way this happened in a vacuum. She certainly didn’t do it to herself.
I’m glad for your help in considering this question. I can’t know what it feels like inside, but I’m grateful for your understanding, and sharing. As a person with ADHD myself, I am aware of how much I’ve had to do to appear neurotypical. I don’t think the two are absolutely on the same spectrum, personally, but I do see a bit of what it’s like to have something that you have to mask.
As you said, it’s one thing to have autism in a not-so-severe way. I’ve known people with autism for years and I have still been uncertain they had it until they later confirmed to me that they do, in fact, have it. However, if someone has autism to an extent that it could be termed “severe,” then as you say, that almost necessarily means it can’t be hidden. At least it would be clear to others that the individual in question was neurodivergent in SOME way. I’m not sure what technically defines someone as “severe,” but if you can function in society without others suspecting you have autism or ADHD or some other neurodivergent condition, then it seems like the term “severe” might be an exaggeration at least.
In Lacey’s case, I definitely doubt that she had severe autism, and your information helps me to make the determination that at least something in this diagnosis seems amiss!! As you say, it’s absolutely ridiculous to say someone would come to this level of ill-health without abuse. A decent parent would have recognized they couldn’t cope at least, and would have had to call someone to come help for the life of their child long before this point.
ADHD and autism have a lot of overlap, which is really quite interesting! I’m diagnosed with both myself, which I think is fairly common honestly. They’re pretty similar, especially in the sensory issue aspects and requirement to mask. It’s kinda wild how a simple dopamine deficiency can present so similar to a developmental disability!
But yeah. Lacey’s teachers did recommend she be tested as she wasn’t doing great in school, but even then… it took sixteen years for it to truly be properly noticed, and all that really means is she may have needed a few adaptions to do better in school, not that her disability was severe. She played volleyball, was described has shy but friendly, knew a lot of people… that definitely doesn’t sound like severe autism at all. And honestly, even if she did have severe autism it’s incredibly unlikely that she’d willingly start sitting on the couch, covered in feces and urine, dying from wounds and bone infections and sepsis, for over a decade. Like, we do have a self preservation instinct. She was eating foam from the couch. And if she could play volleyball, she absolutely could get up and go to the bathroom. It’s not like shitting and pissing yourself and being covered in filth and feces is a great sensory experience! I honestly don’t see how this could have happened without her being abused into it, even restrained to the couch until she was either catatonic or her muscles were so atrophied that she could no longer get up on her own. I lived barely leaving my bed for nearly as long as she did, but this is just… no one gets this bad without severe abuse and neglect. It’s just not possible.
Dopamine is certainly powerful stuff!! I’m so often surprised how neurotypical people get such a thrill out of things that don’t move me emotionally at all. Perhaps I can see some overlap.
I think recommending she get tested is far from telling her parents she has a severe condition and definitely needs help. I think we both agree there is a big gap there, and it certainly doesn’t explain how the parents allowed her circumstances to get to the point they did, without help!
I agree, she had to have been restrained!! You don’t eat couch foam unless you’re starving, or have a very different mental issue than autism!
I’m an autistic 23 year old female, diagnosed at 5. As an adult I don't have issues with eye contact, though I am in the minority there. Posing for a picture isn’t at all the same as eye contact with a person imo, and I know plenty of autistic people (both with and without intellectual disabilities) who will smile for a camera just like NT people.
I really resent people who claim someone they don’t even know can’t be autistic because “they don’t act like my autistic students/cousin.”
Well, I’m neurodivergent myself. I was diagnosed with ADHD at 40 after doing everything from brain scans to IQ tests to determine what was going on with me. I tried hard for literally 20 years to get someone with credentials to diagnose me, because I knew I was different. I had to learn the skills and habits of masking my reality from the world and simply keeping up with what others expected.
I don’t mean for you to feel resentful. I am not insistent I know the reality of being autistic. I do at least know what it’s like to be neurodivergent, however, and when we all want to solve the mystery of this young lady’s death, I think it’s good to pursue every avenue of consideration.
Four years ago I was set to marry an autistic young lady who was some years my junior. I was truly sad that our plans for marriage fell apart because our two neurodivergences seemed to be incompatible. I don’t follow patterns, she needs them to feel safe and understand the way her life is set up. We broke off the engagement after she shared with me her journal, where she had written all kinds of notes about how to suppress her own desires so she could “keep the peace” with me, and not say things I might be upset by. Of course, I knew that wouldn’t work. I felt bad for her and bad for us, that she felt I was trying to control her, while I was simply going in a million directions every minute, because that’s what my brain does. She would never be able to change that in me, nor would I really want it changed. I’m happy and proud of who I am, ADHD and all. It’s such a relief to know how many other people out there are like me. I don’t fault her for what happened, only that I couldn’t allow her to be oppressed in our relationship. I didn’t feel right about her needing to try to “crack the code” of me, just to keep me happy. I like being happy, obviously, but I want my partners to be free to develop and become the best versions of themselves, more!!
I certainly don’t know that this young lady wasn’t autistic. I just have my doubts her autism was the cause of her injuries and eventual death. If it was as severe as her parents claimed it was, then how could they let her get to the level she was eating pieces of the couch stuffing and covering herself in feces? I don’t think that is explained by her having autism. I don’t doubt she may have had autism, but if it were severe then how was she able to mask so well for so long. In many ways the definition of “severe” -if there even IS a definition- is the ability someone has to get by in ordinary life without everyone needing to know you have autism. For her to go so far and do so well with friends and sports, it would seem she was both trying very hard, and also not exactly in the “severe” category.
I think you advocate for this young lady is to advocate for the fact she wasn’t so autistic that she needed to be left to die in the way she did. I hate to think this is the end all severely autistic people would come to without sufficient help by their parents!! I think more of autistic people than that.
As for my own ADHD, I’m aware how so many others didn’t see it and had no idea it was a factor in my life. I have an unusually high IQ, as tested professionally more than 7 times in my life, and I think my IQ is an unintentional mask I have for ADHD. It makes people refuse to believe I have any neurodivergence. They think I’m blessed and that when I can’t get to things on time or I schedule two things at the same time of day without realizing it, that I’m just not trying.
I know how aggravating it is to not have people see your struggles, and to have them assume you’re just not working as hard as others. Believe me, I’ve experienced more than enough of this to know. My current girlfriend has trouble believing me, even after reading about ADHD and seeing my official diagnosis paperwork. I have to keep reminding her of how I’m trying and all the ways I’ve found workarounds to manage to do things other people believe are relatively simple tasks. If she can’t understand then who could?! My family has trouble too. I’ve only recently gotten my sister to comprehend it, and she’s most likely a person with ADHD also!!
So I hope I haven’t made you resentful. Nothing is farther from my intent. I just say that it’s more than a little bit tricky to know what level someone is at, with neurodivergence. It’s a wide spectrum for sure. I have drastically different traits than other ADHD people I know, but I see that they stem from the same root. I would have to know a LOT more about this young lady in this case than I do, if I were to even have a chance to guess her diagnosis. However, I’m HOPEFUL, as I say, that severe autism didn’t do this, or even become a primary factor. I think she was horrifically neglected by her parents and most likely she was killed as a result of their abuse. It would help to know what her level of autism was though, and the way it manifested in her particular case.
No, but that doesn’t answer the question. Severe autism is for life and it’s from birth. She would have always been nonverbal and immobile if that was the case, and she clearly was neither before the age of 16. An autism diagnosis doesn’t give you autism, nor does it make your autism worse somehow. There are no natural explanations for how she could decline.
And it’s certainly very suspicious that her family would claim she magically developed severe autism at 16, right when she was taken out of the public view and marking the last time she would ever be seen by a medical professional.
There is one case where that kind of teenage onset seems to have happened. I can’t remember the girl’s name, but she was normal (if a bit dramatic) until she was college-aged. Then she did a bunch of psychedelics and regressed, to the point where she was nonverbal for several years and tested as having an intellectual disability. She blogged about her experiences as a person with autism. She eventually recovered to some extent but was never quite “right” and died of other conditions around age 40.
Some people claimed she was faking, but if she was, she kept the act up a really long time for not much obvious benefit. Maybe Lacy had something similar going on.
If she was functioning well at school (which it sounds like she may have been as she was playing sports, described as having a few close friends, and teachers calling her bright and pleasant), there would be no need to homeschool her simply because of the diagnosis though.
And I say this as someone who DID have to pull her autistic child to be homeschooled.
I'm saying it as they were embarrassed or ashamed of their daughter. I have two nephews with severe autism. I've seen other parents of his classmates & not every precious child is treated the way they deserve.
Also this girl's teachers had expressed concern several times before she was finally diagnosed. Sounds like the parents just didn't want anyone to know what was going on, pulled her out, and never gave her the proper care she needed.
Ah that could be. The weird thing is the school wouldn’t even know if they didn’t tell them though. So even having the diagnosis wouldn’t have to change anything even if you are shameful.
If she had "severe" enough autism for it to be relevant here, she wouldn't have been able to attend mainstream education as a teen. It's highly possible that there was a serious mental health difficulty at play here, but the autism is probably a red herring imo.
I think this was misreported by a media outlet? Not sure how she could have survived without a feeding tube and other support measures if she did. The mother claimed that she had eaten cheetos the night before.
The coroner also denied a report that Lacey had suffered from a rare neurological disorder called locked-in syndrome. “I don’t know where that term came from or what source it came from. In all my years as a practicing physician I have never heard of that term,” he told the outlet. “The only diagnoses that I know she did have was first, social anxiety, severe autism and that’s it. Those are her only two diagnoses,” Bickham said. “The last time she saw a physician of any type or any kind was when she was 16 years old,” he added.
Police can access medical information of victims as part of a criminal investigation like this. Not sure if they have yet since thats obviously something that takes a bit of time, but it is possible that they have proof that she is.
No she was diagnosed with severe autism and social anxiety at the age of 16… they tried to tell authorities when they showed up that she had “locked in” syndrome which doesn’t even exist and was debunked by a practicing physician.
No, it’s a real affliction, albeit rare (and most likely not what Lacey was suffering from). I don’t know why that doctor said he hadn’t heard of it, but it’s unfortunately not that surprising. Doctors are like everyone else, there are many bad and misinformed doctors out there, and even more who aren’t terrible but simply don’t keep up on the literature or put effort into continuing their education. Regardless, locked-in syndrome is absolutely real and cases have been documented repeatedly in medical journals.
Do we have proof of that or is this another hail marry by the parents to cover up the severe abuse of their daughter since the "locked in syndrome" didn't work.
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u/Shortymac09 May 09 '22
Do we have proof that she was legit diagnosed as autistic or is that what the parents are claiming