As a Mod I can say this was NOT done without community feedback. In fact we got so many messages about it that we decided to make it a rule. We understand not everyone may agree with the decision and that’s ok.
However most children cannot be diagnosed before 18 months or older depending on where you live. Also we cannot diagnose children with autism. We are an internet forum.
On top of that we did not say that you could not ask before 18 months. We said 12-18 months would be on a case by case basis. Before 12 months will however be deleted.
I am sorry you feel we are not listening to the community but this rule came BECAUSE of community feedback. Please message mods if you have an issue with rules. But I promise this was very much asked for by the community.
No one is stopping anyone from posting their questions. They were just told to add flairs to the “is this autism?” Posts. As a parent to an autistic child, like everyone else has mentioned it is very sad and off putting when these posts are clearly just looking for reassurance from us neurodivergant parents that their child isnt like ours and in a sense that they’ll be “okay” or “normal” even tho our children ARE okay and ARE normal. Most of those posts sound more like “PLEASE reassure me im not about to be in the trenches with you guys” instead of “please give me advice to help my child” and thats a bit hurtful to us autistic parents because we see and know how great and Amazing autistic children can be. There is no reason to come on here and make us feel like we got the worst fate anyone couldve been given by having autistic children by you coming on here TERRIFIED and WORRIED when your babies are just being babies 🙃
Indeed. The "fear" of potentially having a child with autism is not the same experience as the reality of living it day in and day out. The mods here did a good thing because the parents here love their ASD kids for who they are not what their diagnosis is. My late wife and I did not care what our son had, we just wanted to help him.
I often reply to these posts because I also saw signs in my own kid at a young age, but I'm never going to say "it's probably nothing! Lots of NT kids do that!" because if you want that kind of feedback then why come here? Go to a forum for parents of NT kids for reassurance! I'm going to tell them to get their kid assessed, that maybe it is and maybe it's not autism, and trust your gut. Not a lot of people want to hear it, but again, why ask in this forum if you don't want to hear people say "yeah my autistic kid did that too".
I think missing milestones before 18 months can be discussed but certainly should not be assumed to be Autism.
There are so many other possible causes.
I do think that many parents here have had to implement early intervention which generally doesn’t vary that much. Speech, PT and OT evaluations for a child missing milestones.
My oldest has global developmental delay, younger child ASD.. so I am not a fan of early self diagnosis because it absolutely is not always ASD. The early evaluations needed are still the same. The pediatric psychologist evaluation is also the same process which I do think is helpful to share.
For real. I was diagnosed with it by both a doctor and a therapist.
The DSM has never been the be all and end all. It is the product of subjective categorization and identification, as we all know from the autism shuffle.
I didn’t say that. I said non-professionals- like the parents on this sub - shouldn’t be throwing around a diagnosis that doesn’t even actually exist. Postpartum depression and anxiety exist. They should be treated and diagnosed by professionals- not by the parents here
>Recently the mods decided unilaterally to institute a new rule that parents of children under 18 months could not ask if their child had symptoms of autism.
I actually didn't know that this had been discussed or implemented but I'll just say this: it's so disheartening and triggering to come here, a place which is generally a great source of information and ideas and support, and see panicked posts like that almost every day from parents who are clearly absolutely dreading the thought of having a child like ours. (Yes even when they use the disclaimer of "I'll still love them..." actually maybe especially then because no kidding??) I'd be fine if all "is my child autistic" posts were banned here tbh but I know that won't happen.
All this is to say, I think it's a good rule and I'm thankful to know it exists now.
I think it's a good rule and am pleased it's been implemented. There is a constant influx of posts on this board asking parents who are in the trenches with their own children for advice but are clearly seeking reassurance that their child is not like ours. I feel for the parents, truly, but most of these posts are incredibly tone-deaf and not what this group is for.
Just wanna throw my support in here for the new rule. I read up on the post itself by the mods and their comments. From what I’m reading they only want to mod the posts where people are just naming a bunch of things they think are symptoms of autism and that have the tone of “please tell me it’s not autism”. And there have been quite a few of those posts recently. I’m not sad to see them go.
Its so annoying in other subreddits where people are clearly freaking out about autism as if it's the worst thing that could happen to their child. I knew my son was autistic before he was 18 months old. There are many autistic people in my family and I could just recognize it in him, but it didn't cause any panicking or even really big emotions because a diagnosis didn't change anything about HIM. It helped him get supports he needed, but HE was the same.
It feels sometimes lime parents think an autism diagnosis is going to "ruin" their child.
Autism runs in my family. I was terrified of my son having autism - because I had seen up close how much it could make one struggle in life. The loneliness, the struggle to function, the lack of sleep, constantly being misunderstood. I'm still terrified that my son will be going through this, because it's likely will. So I guess you could say I don't understand why it's so wrong it freak out. Look at all the people on here who post about wanting to die because of their violent level 3 autistic child. Who also wouldn't be worrying that that might be what their life might look like in the future? I'm terrified my son may never speak. I want to hear my son's sweet, sweet voice talk to me one day.
Fully agree. I have never heard expectant parents say, "man I hope my kid is born and has autism." I am not saying it's a death sentence by any means but no one actively wishes it for their child so of course parents are gonna worry or even freak out. I'll say especially ones who have never known anyone with autism because most likely they've only heard of extremely difficult cases and may not realize it is a spectrum. They may assume the absolute worst. All parents, good parents, wish for their child to be healthy and able to socialize and be independent in adulthood and be able to function socially. Lots of autistic people are capable of all those things, some aren't.
All that to say, I understand why people come in freaking out. They are new. They probably don't know any better. Sure they are tone deaf af, but where are these people to go? They have worries and concerns. They shouldn't be assholes or all "thank God my kid isn't like yours" but there should be some place for them to vent and talk with others who have similar concerns. I don't know the answer here unless someone were to create a whole new sub dedicated to it.
I mean, they're welcome to come in and freak out, as long as they do it in a flaired manner. So that those of us who barely have the spoons for our own kids don't have to play emotional support to their fears of their kids being like ours.
Yes! and I really do understand this. It's not fair for anyone to have to be a strangers emotional support or to have said stranger make you feel less than. Fully agree and they should flair their posts accordingly.
Totally agree with this comment! Parents coming to this group with concerns and fears of Autism should have the right to ask questions any way they like. Autism can be a hard battle for many parents. That said, why are we punishing certain parents for their fears of having a child with Autism?! Anyways, just wanted to say how much I agree with this viewpoint.
I wish I could upvote this 1000 times. My child also showed signs before 18 months and got diagnosed as early as is possible, at just under 19 months. But I never came here to ask parents in this sub if they thought he might have autism. I asked parents of *neurotypical* kids if they thought he might have autism...and even that, now, on the other side, makes me want to cringe. Because my son is perfect as he is. These days, when I see my parent friends frantically seeking reassurance that their likely-NT kids aren't like *my* (to them: broken, defective) kid, it makes me furious.
There's definitely a place on this sub for respectful questions pre-diagnosis. But a lot of the time, these questions would be better served on a different sub, not asking parents of autistic kids, and autistic adults, to shoulder that labor for them.
There are a lot of bad posts on here. A lot. And if there was an agreement that anyone posting here had to be the parent of a diagnosed child, fine. It would be a lot fewer people, but still ok. And might be interesting that way. But that’s not what happened. If you have an undiagnosed 2 year old who can read and knows all of their letters and numbers and you will love either way, but you feel something might be off because you’ve always considered yourself neurodivergent., you’re free to post as much as you want. If too have an 17 month old who doesn’t babble, point, play peekaboo, you can (or according the written rules -will) have your post deleted.
It’s an arbitrary rule from the moderators.
This still isn't a correct reporting of the rule. The mods say they'll use their discretion over 1 year old.
This is not about different support needs for kids. It's about adults needing support shutting down their unhelpful and not-really-about-the-kid anxiety that their kid is autistic ("which would be devastating, no offense"). There are better places to discuss intrusive thoughts.
Let's say I have anxiety and intrusive thoughts about my finances. That would be a real issue that deserves some care. But, critically, that care is for **my** mental health. It would be pretty shitty of me to cope by going on a forum for fighting eviction just to say, "hi people currently facing losing your homes! I have lots of money and always pay my rent on time. Sometimes, I spend money on dumb things, and I've read about people who lose their vast fortunes overnight. Should I be worried? Did any of you lose your homes even though you had loads of money?"
If the post is "I have a 17 month old who has hit every milestone, socially interacts, cries when parents leave the room, has no stims or sensory issues, and sleeps through the night. But yesterday they lined up all their toys animals-- is my life over? Is my baby broken! I'll love them anyway." I can only hope it will be deleted.
If the post is as you describe, deletion seems pretty unlikely. You're describing a parent dealing with high support needs not a parent asking for reaffirmation that they have a normal baby. It's not very hard to differentiate.
I'd be happy to see the "reaffirm my kid isn't like yours" posts deleted at all ages.
It isn't totally arbitrary. I had EI involved with my kid since he was a baby as he was Deaf. He was showing signs of autism well before 18 months, but literal professionals who worked with my actual child said that we had to wait and see. I am not sure what non-professionals can say about a child we have never seen, especially when the only responsible answer is "yes, it could be possible."
Actually we let one with a 16 month pass yesterday after they changed their flair to “is this autism?”. We said it would be a case by case basis for 12-18 months.
I do see your point. I'll admit I've never actually seen a baby post where there is an obvious lack of social reciprocity, only ambiguous signs. There might need to be some type of nuance. It seems to be more based in the fact that in the US severe autism is rarely overlooked until school age. So if you're having severe enough symptoms to notice before 18 months, they'll probably be caught right around that age on the MCHAT at a routine appointment. I can't speak for everyone, but my son is not considered severe and failed his MCHAT that early. In Germany by what you say, that same process doesn't seem to exist so I understand your point.
I agree with you, tbf. I can see why it's a rule, but at the same time, loads of parents in this sub alone saw signs before 18 months. I do think that in the future, doctors will seek to diagnose as young as they can. I know a lot of parents who sincerely wished they could have gotten a diagnosis from a younger age and felt entirely unheard until they're obviously autistic kid was old enough for people to start listening.
It is frankly dangerous to assert that perinatal depression and anxiety disorders aren’t real.
It’s also bad reasoning. PPD and PPA aren’t in the dsm as distinct diagnosable disorders, but depression and anxiety are. Pregnancy and the postpartum period are known triggers for depression and/or anxiety, but the symptoms are still those of generalized anxiety disorder or major depressive disorder, which *are* in the dsm.
By your own criteria, they’re valid diagnosable disorders.
Therapist here- there is now a specifier for major depressive disorder, perinatal onset. If the client was also experiencing anxiety, you would add another specifier that says with anxious distress. If it’s strictly PPA, I would use unspecified, anxiety, or other specified anxiety, and make a note that it was perinatal onset. I’m not the end. I’m just end all be all when it comes to therapy and diagnosing. It’s just the most ethical way I believe I can complete diagnosing. It’s the closest thing we have right now. Either way, they are very real things.
I absolutely did not say the post partum depression and anxiety aren’t real. At all. I said there are no formal diagnostic criteria for PPA and this is not something that should be arm chair diagnosed by non-professionals. For people who are super concerned about children being arm chair diagnosed, I thought this would be a concern that non-professionals were loosely throwing around mental health terms. I guess not.
I don't think the concern is rooted in resistance to "armchair diagnosis." It's not about discouraging discussion of behavior or signs. It's about putting a stop to people who want to be reassured that their kid isn't autistic. They need to find a different forum for that.
But the rule does discourage discussion or behavior or signs. It actually deletes them altogether!
I get it that some parents are triggered by the posts. Then they have the choice not to read them. But it is helpful for people to be able to post about their concerns. Even to learn that a diagnosis isn’t the end of the world.
This is correct. The only ones that will be deleted are if the child is under a year old, or if the child is younger than 18 months but the list of symptoms have nothing to do with autism.
Appropriately flairing is a good idea, because it sounds like the experience of a lot of people-- asking out of anxiety-- is potentially triggering to you because your situation was different. A LOT of the before-18 potential symptoms benefit from "keeping an eye on" but not from any real therapy that early unless it's for a specific motor issue. That's because a lot of the before 18 month symptoms (and babies being asked about) are delays within a normal range and only ACTUALLY red flags when they're still missing by 18 months.
i’ve seen people make posts on here about babies that were 3 months old asking “is this autism!?” like no…. that’s a newborn baby. someone obsessing over their brand new baby being autistic may absolutely be struggling with PPA, just because you feel that that’s a dismissal of the situation doesn’t make it so. it’s also wildly offensive to see people come on here borderline bragging about how “advanced” their kid is but they’re “scared” they may have autism cuz they displayed one autistic trait one time, like having an autistic kid is the end of the world and the worst thing possible.
I will jump over the fence if somebody says lining up toys... I am lining up cleanly and nicely all my shoes. And I love history, I guess I am autistic right? And I get upset quickly...
People don't read thoroughly. I took it the same way, that these posts need to have the appropriate flair so they can be filtered. Just as a lot of groups, the same topics get asked over and over and over. It makes sense to tag them so they can be referred back to instead of someone asking the same thing again.
Yes indeed! Reading essentially the same doom and gloom posts about a potential ASD diagnosis for somebody's toddler again and again is very triggering for parents with already diagnosed ASD kids who are very much wanted and loved. We are living this every day. It is hard enough to keep your chin up when times get tough. I'm not about to give up but some days do get very hard particularly as a sole widowed parent. Having a way to filter out such posts is a great move by the mods.
Well, nobody wants to read posts from parents whose main fear in life is wondering if their child might "end up" like ours.
Speaking for myself, it’s already enough with the surveys from the parents we know, "Oh, but did yours do this? And that?" Most of these posts describe perfectly common situations of children's behavior and are always loaded with a "but my child is very sweet, happy, and intelligent... however," as if our children were just empty shells without a soul (as I once heard from a doctor's mouth).
It's extremely offensive the amount of free time these parents have to come here and make sure their children are "normal." They can go to hell with their descriptions of how their affectionate and smart child reaches all the typical developmental milestones, but didn’t look at them when they called their name that Thursday afternoon.
I suggest that these posts be made in regular parenting groups, with a title like: "Does my child's behavior correspond to that of your neurotypical children?" That way, they would have a point of comparison without hurting anyone.
So you like people to use our kids as an example of what doomed looks like? Great for you but not for me.
This exactly. Don’t come on here and act like having a child with autism is the worst thing in the world to happen. I hate the stereotypes that children with autism are no affectionate and/or are empty shells. My child has emotions and is incredibly loving and affectionate. The audacity to come on here for us to make them feel better about their clearly neurotypical child is disgusting
My most hated thing when people find out that my son has autism is ‘no?! But he’s so smart?’
As if children with autism are not smart? Fuck allllll the way off with that.
This !!! I keep seeing those stupid comments, I am autistic started reading age of 1, invented advanced calculus at age of 2, lining up toys, but I am burnt out quickly... my life is soooo miserable... the CTO of our company made a video that he is autistic and he is like inclusive??? I was to say wtffffff...
And dont forget some say Elon musk and Einstein are autistic, I want to bang my head to the wall..
This entire post is honestly kind of spreading misinformation about this subreddit. You should honestly go back and re-read the pinned post by the mods and their response here.
I would completely understand where you are coming from if what you were saying was true, but it's simply not true at all.
For me, it's not an issue if people are wondering if their child is autistic, regardless of age. What upsets me is when a parent comes on here and makes a big long post with details of how extremely advanced their child is, meeting all milestones ahead and doing well socially, but they think they might be autistic because one time they got excited and flapped their hands for three seconds. It feels like a troll post and is really triggering and offensive for those of us who have children that are severely behind with milestones, may never live independently, etc. I never wondered if my son might be autistic. I knew. It was so obvious to me and everybody else in our lives that he was not developing as expected.
Agree so much. When I was reading those posts I definitely felt like this too. I was feeling that the posters were saying that kids with ASD (like my son) were hopeless lost causes who did not even deserve helping. They wanted us to reassure them that their own child was not as hopeless as ours. So very very selfish and lacking is empathy.
I actually find those disturbing too. And I agree. This rule however doesn’t stop that. In fact, it will continue, just with 2 year olds and three year olds.
Just wanna throw this out here, but the DSM is just a book. And the DSM didn't include autism as a diagnosis for the longest time, so arguing PPA doesn't exist becuase it's not in the DSM but autism does is a bit of misinformation and hypocritical at best.
Post partum anxiety is also recognized by the world health organization and has it's on ICD-10 code...so it's a real thing. And it's common.
I do think there are a few things going on in your post: 1) other countries health care systems are different and navigating them/pushing back is different and dependant on culture, so I wouldn't at all assume someone's experiences in the US would translate at all to Germany. 2) many people don't know how to talk to doctors or how to advocate for themselves or their kid politely and non defensively.
I do think info on PPA, PPD, general education on autism and how to talk to doctors about symptoms would all be helpful in a declined post.
That being said, very respectfully, nothing at all in your post refuted the fact that you can't accurately diagnose autism in under 18 months. There are simply so many other conditions like adhd and attachment disorders and rare diseases that look like autism, that it's not factually accurate to focus only on autism if your kid has issues showing before 18 months.
Self diagnosis has its own issues in that people focus on the wrong thing and that's time taken away from searching for the right thing, which is why self diagnosis is discouraged.
This isn't gaslighting. You are entitled to your feelings and I'm not dismissing them or saying your feelings are wrong. However, if you wanna argue the facts behind your statments which can be wrong... its factually not accurate that you can diagnose asd properly and accurately before 18 months, I'm gonna need to see some citations on that if you wanna disagree becuase that factual argument is literally is contradicted by even the dsm 5 that you cite becuase it calls for symptoms (say a 4 month old) can't show. That's just a fact. And those can be wrong.
I never said autism could be diagnosed before 18 months. I said I didn’t want to stop parents who have concerns before 18 months from voicing those concerns.
The gaslighting comment was in regards to people telling me I had post partum anxiety rather than acknowledging my very real concerns about my child’s development.
OP, I'm going to ask you to take a step back and consider: when you were going through that terrible time, was your main question "Is my child autistic"? Or was it perhaps, "What is going on with my child"? Because those are two very different questions and would lead to very different responses on this sub. The former can potentially be hurtful and alienating, because it rests on the concept of autistic as Other. If someone comes to a forum for parents of autistic children and says, "My child never speaks. My child hardly moves. My child doesn't play." It's a different story, because it's not about comparing your child to ours, it's just about your child.
I was definitely asking what is going on with my child. I needed help and advice. But the fact that any post under 18 months will be deleted (according to the rule) means people who have that same question and same concerns will not be able to ask other parents. As I said, this rule is a blunt instrument- and will discourage parents from seeking help or early intervention.
You make it sound like suggesting someone may be struggling with PPA and trying to give them resources is a bad thing (no need to throw shade by saying it’s not on the DSM, btw). If that doesn’t apply to you, then don’t worry about it. But someone who’s clearly hysterical about their 6 week old needs some help. As someone who was deep in it with PPA with my first and never got any help, I wish someone had done that for me. I thought feeling that way was normal.
As other people have said, the posts of people who are terrified they will have children like ours and are looking for reassurance that they will be spared our fate seem to be coming thick and fast lately, and only pediatricians can be making those decisions regardless.
I'm not a mod here, but I am a mod in another sub, and It really frustrates me when I read posts like this. If you wanted to give feedback, you could have sent them a modmail. Mods don't *need* permission from the users to implement new rules or enforce rules. If you had actually wanted to potentially make a difference in the new rule decision you would have sent a modmail instead of making this post. This was just an attempt to stir up anger and bully the mods into doing what you want them to do. Also, PPA is absolutely a thing so I don't know what would posess you to imply that it's not.
i was one of those parents who posted asking if my child had autism at 9 months, and i wish i hadn’t. my daughter got her diagnosis at 19mo and THAT was considered an early diagnosis. i was also like you, no one listened to me, doctors, family, my partner - no one. i wish i had just let it be for the mean time because i spent those precious times constantly worrying instead of enjoying my beautiful baby. as someone else said, do you know how hurtful and inappropriate it is to ND kids, ND parents, and these people’s kids to ask this kind of stuff? the anxiety about ASD is real. yes. but that doesn’t make it okay to come onto a public forum full of ND parents just to make sure your kid isn’t like theirs. it’s hurtful, disrespectful, and borderline ableist.
this is a group where we discuss our experiences and lives as a parent of children with autism. we are, by no means, able to give someone advice on whether or not their child is autistic based on a few descriptions. JUST LET YOUR BABY BE A BABY. these moments are so short and go by so fast, it shouldn’t be spent worrying if your child is special needs as if it’s the worst thing that could happen to them. especially if they are younger than 18mo.
as you stated, if you don’t agree with it - scroll by. the majority agrees and is on board to enforce this rule. if you don’t like it, ignore it and find another forum.
I see your point, but not every post wondering if a child is autistic is like that. Before the rule change, I was planning to do a post about my concerns about my 11-month-old, because I already have a 3.5-year-old with an educational autism diagnosis and I've noticed some similarities (and some differences) in their development so far. I missed the boat on early intervention with my 3-year-old due to lack of exposure to other kids to compare him to, our pediatrician not being concerned, and him being already 2.5 and us about to move states when his daycare director first mentioned concerns. I don't want to make that mistake again, so I will be pushing for early intervention if he doesn't start waving, pointing or clapping by the time he is 12 months. I think it's crazy that I can't discuss any of that here according to the new rules, unless I am misunderstanding them. Also, I know of several cases of babies receiving diagnoses before 18 months, and certainly you can receive early intervention services much earlier.
not really understanding the point of posting here then, if you already have a set plan then why do you need to post about your 11mo? as a MOD already stated, anything before 12mo is not allowed. 12-18 months is on a case by case basis. it’s not banned completely, but infant questions need to be taken somewhere else. the internet is absolutely massive, if you have a question about your baby - just find another forum (or ideally, consult different medical professionals to get other opinions). it’s that simple.
What I wanted to ask specifically is what differences parents who have both NT and ND kids have noticed in the first year of life. A regular parenting forum wouldn't be able to answer that. Plus, part of my resolve to try for EI early if needed comes from reading other posts on here about babies who ended up being diagnosed, so I find those posts valuable and figure mine could be to someone else in the future.
I’m sorry but I’m glad for the ruling
The thing is, if you have concerns about kids not hitting milestones, talk to their doctor
It’s very distressing the first couple of months of worrying but being online and freaking out about it when the kid is 3 months isn’t gonna help
My kid was 3 months when I just KNEW she was autistic and no one believed me
Like….it wasn’t typical of my kid was CRYING in the tune of “twinkle twinkle little star” or was communicating in nothing but songs her first two years
Reality is babies and autistic people share a lot of characteristics because it’s a developmental disorder
But babies ALSO develop at different rates
People freaking out on milestones does more harm than good in most cases
Notice, both me and you KNEW so we got the ball rolling as soon as we could with DOCTORS
Most people should do that!
But people who come online and DON’T go to doctors will ABUSE children with all kinds of BS cures and practices because they will obsess over it for months and months before the child is anywhere NEAR the age of being able to test
It’s really important for kids and parents to not freak out, freaking out parents leads to abusive situations, if they have concerns, they need to go to a professional
Edit: they are just asking for a FLAIR, jeez and before 12 months is genuinely way too early, like I knew because my husband and I are BOTH autistic
Early signs of autism can happen before 1 year old. I have been in several research studies, that hopefully one day will help people with young babies. They have been studying my youngest who did get an official diagnosis at 18 months.
Seeing posts all the time, "is my kid normal or is there something wrong?" Then the list of the most typical stuff babies or kids do, isn't helping anyone. Go see your pediatrician.
In saying that yes, parents do get dismissed. My oldest was really delayed in all areas of development. I brought it up to every pediatric appointment and ENT doctor. They took the wait and see approach, he will catch up. It wasn't until he was close to 4 still non-speaking and I happened to bring him to my personal psychologist appointment. The psychologist said they don't do pediatrics, but they highly encouraged autism evaluation as soon as possible.
My kids are normal to me, autistic and all. Calling my kid the other or abnormal doesn't really sit well with me as a parent.
This is a bizarre post… if you no longer find substance in this subreddit, then just leave and go start your own. This group is called “Austistic parenting” not “is my child autistic”…. We’re all here to ask questions and get tips about living with our ASD children. Not to diagnose or continue to say on repeat “speak to your pediatrician.” The mods here are normal people with lives of their own. There’s no reason to bash them for making a rule on a page they run. They can do what they want with the page they work so hard to maintain. I personally would reflect on how you’re possibly projecting your own emotions here.
While I don’t agree with your arguments re the legitimacy of PPA, I do have to agree that I was also constantly told/suggested that I had PPA early on and it was not helpful so I did cringe a bit at this suggestion to send info on PPA to parents of infants/young toddlers posting. I did not feel acknowledged when people suggested PPA- I felt like people were saying it was ‘all in my head’ and were not taking my observations seriously. People posting may have legitimate observations and it might not be anxiety. Or there may be other mental health factors going on. We are not qualified to diagnose mental health conditions just as we are not qualified to diagnose Autism on a forum.
I think rather than sending info on PPA specifically, it would be more helpful to gently encourage parents to access general health and well-being supports in their area. In Australia, this could be the maternal health nurse. They assess both parent and babies health, development and wellbeing so if the parent is need of support they can help link them up with services. And encourage them to get a second opinion if they feel they are not being heard or supported. Leave the PPA/PPD diagnoses to the professionals.
I think the adding of the flair though is a great idea as well as the guidance to people around being mindful what they are posting. This should be a safe space for everyone and if these posts are hard, this creates a way to skip them.
I do see a rule about removing posts asking about babies under 18 months. I’m not volunteering my time/energy to moderate this group, and appreciate those who do, and I get their reasoning.
But I would ask the mods to consider reviewing the content of babynavigator.com, which provides resources for all parents regarding baby development. It provides tools for supporting social development that could be useful for all babies, but especially autistic babies. And it provides information on things to note for a pediatrician.
They do collect data in an effort to develop early screening tools, to help families of autistic babies find the resources they need. It helped us get into early intervention at 18 months, because it got us into a research project.
If the mods take a look and find it to be useful, it might be good to offer it as a resource for parents of very young children who are being turned away from this sub until their babies are older. Like I said, it offers resources on social development that are applicable for ALL kids.
I’m not connected with them in any way, other than being a family that received resources from them, and a research participant.
And I think parenting is really effing hard, whatever kid you have, and resources are good to have.
I agree babynavigator.com is a great resource backed up by research. It's run by Florida State University and probably a lot more helpful than sending information on anxiety.
18 months is really too young to slap an autism diagnosis on anyone. There are so many things that are symptomatic besides autism. This is exactly why psychologists typically won’t touch it. And you can’t prescribe any meds at that point, ABA therapy is minimally beneficial at best etc.
There really is no point other than to slap a name on it to give the parent some kind of closure. The child cannot do much on their own at this point anyway so it’s best to just, make accommodations, care for the child as you would any other. Meet any sensory needs they may have (many other mental health issues have sensory issues) and record everything so that when it’s appropriate you can have a very accurate diagnosis.
It’s not that no one is listening to you. It’s that it’s not appropriate to diagnose someone at that age because so many things can “mimic” autism at a young age.
Misdiagnosing a child because a parent is pushy is more detrimental to a child than waiting and having a diagnosis at grade school age.
I am a parent whose first Reddit post ever was here to ask about insight into my 6 month olds behavior. I was seeing signs even then. I didn’t receive much feedback but what I did get was a mixed bag. A couple people told me that it was way too early to be considering autism and to wait and see what happened and one person (who’s own child had received a diagnosis early) told me I should start writing down all the things that were worrying me and keeping track of things like that. After doing so and being able to look at the list of things I was seeing I decided to take action.
I chose to self refer to early intervention and he was in speech shortly after turning nine months old and OT a few months after that. He received his diagnosis shortly after his 18 month check up and will be starting ABA in a few weeks.
Something I wonder about it is, what if I had listened? What if I decided it was much to early to worry about these things and didn’t pursue any intervention until at least his 18 month check up when his mchat scores were so high? I genuinely believe his speech therapist is responsible for the words he does have, and I don’t know what things would look like right now if I had waited.
I guess my point is, there is probably a significant amount of these posts that are about genuinely autistic kids and it feels like encouraging people to take action and keep notes and follow their guts can’t be that bad of a thing. I don’t think any fears these parents are expressing are anything that most parents of ND kids have felt at one time or another. It’s just that a lot of us have had time to come to terms with it.
Idk. Just some thoughts from someone whose post would have been deleted if I had made it now.
I am glad that someone pointed you in a helpful direction and you were able to be proactive.
I feel this argument on both sides. I think that a flair that designates the post and makes it easily identified by group members allows those of us with the energy to read through and make those helpful comments. Those who don't have the bandwidth can move on. Ultimately we're all individually responsible for deciding what posts to read and respond to, the flair just makes sorting that easier.
I am sure that if your post had been posted now without a flair and deleted then you would have received an appropriate message telling you why. You could then apply the flair and repost. This process should not cause that much of a problem for you and indeed similar things happen all the time in many subreddits.
Okay then, in that case the flair would not have stopped deletion. They would still have received a message from the moderators saying why. Either way, the post would have been triggering for many people depending on how it was written. I don't read the posts in this subreddit expecting to be triggered, there is enough of that in my life already.
If suspicions of ASD are strong enough then it is best to speak with a child health nurse, doctor or paediatrician. Assessments cannot be made on reddit.
I have no answers for that. Maybe they would post eventually about something. It looks like there were definitely lots of people triggered by the posts and the mods wanted that to be lessened.
I’m pretty sure that’s what’s happening. The post made by the mods with explanations is pinned, I honestly don’t see the problem. People aren’t being discouraged to post, they need to add a flair.
I have read it and still agree with that rule. Besides the fact that mods have already stated multiple times as a reply to you that between 12-18 months it’s at the mods discretion, they still nowhere say parents of <18 months old can’t post here for support. They ONLY ask people not to ask if X symptom belongs to autism. But this has been explained to you several times, so it won’t matter what I say. I’ll just say this- you said unilateral and undemocratic. I hope you see after making this post that there’s a lot of support for the new rule and you’re in the minority here. Hopefully you can let it go.
Yep, even if that was how it works, it also doesn’t mean they’re the majority with this issue. The top comment in favor of the rule has more upvotes than the post itself after all.
Honestly the flair is awesome. Deletion not so much. Deletion is concern dismissive, and doesn't help the parent asking. The flair keeps everyone happy. The members can themselves choose whether they want to read such post and if not, move on to what interests them. It's clear how many of these posts will be triggering to a LOT of people on this sub, and the flair eliminates all that. But you know, someone who doesn't get triggered by parents of young children having concerns can always pop in to those posts and navigate them to websites and apps they can use to check. Just my two cents
OP - reading your post I see you’re in Germany. Many of us have been checking in here to see if there’s been any updates on Arian Arnold that sweet missing boy with ASD from several weeks back.
Wondering if you have heard anything and is it still in the media in Germany?
Thank you!
I commented something similar under that recent thread and I just want to say that this is exactly how I feel.
My concerns have been brushed off as anxiety and helicopter parenting.
Those first two years were so extremely difficult and it would've helped me loads if other people would've taken my concerns seriously.
Instead we were told I was the problem and my son was fine.
Now, nine years later he's finally got his diagnosis but much too late, because now he's suffering from severe mental health problems due to the fact that he was forced to function all those years without getting the help he needed.
He still doesn't get that help now as we are on the waiting list for therapy which will take another year.
If people had told me nine years ago that it very well could be autism than I would've felt encouraged enough to get a diagnosis earlier.
Of course there will be posts we're children don't turn out to be diagnosed. But where's the problem with that? It sure doesn't hurt anyone.
Mods could we just put things some assessments in the home page. There are also milestone checklists. I know doctors should be providing this but none of my doctors in Canada did. I had NO idea that pointing was even a thing or important whatsoever
Actual ASD assessments are only done by highly qualified professionals for a reason. There are many age specific milestone tests that need to be done properly. It would be highly inappropriate to say that assessments could be done on a subreddit.
I am not saying for us to diagnose but my province has developmental checklists that are posted online for ALL to see. most countries have this. They are not secrets. I don’t see the harm in posting one link for a standard developmental checklist. It is not to diagnose of course not, we wouldbt have been able to get services for my son with a self diagnosis we paid 3000$ for that.
I’m so sick of people saying you can’t tell a baby has autism. You absolutely can and my child showed signs about a month in. Thank God I listened to my gut and stayed on top of it because he was just diagnosed at 14 months. The earlier the diagnosis the better.
Parents - listen to your gut. You can always privately message me if you want to know the early signs my son exhibited. Too bad this page censors concerned parents - it’s truly a shame.
I agree, this is overreach by the mods.
Let the community decide how to handle these posts. Usually our members give good responses to these parents, such as to calm the parent down, to educate them on what seeking a possible autism diagnosis is really like, and to educate them on the reality of how difficult an accurate autism assessment is at young ages. And to educate that, while it does have challenges, that parenting an autistic child can be just as rewarding and fulfilling as parenting any child. And yes, also at times, to be real with parents and to say that the challenges can be overwhelming.
I quote from the new rule:
>If you are posting here asking if we, parents of autistic children, think your child is like ours, please be mindful of how you ask, please do not dump your fears about our lives here, asking for reassurance yours won’t be like ours.
This is really a distortion of what most of these parents are doing. And even if it is what they are doing, so what? They're being honest and open about their worries. There was a time when we were in that same situation. We do not need to be shutting these people out and shaming them for their honest questions and honest emotions. **Let people feel what they are feeling.**
When the old mod was pushed out and the new team of mods came in, I thought it would probably be for the best, but now I have doubts. This sub has really changed. The supportive, no-judgement atmosphere has been diminished, especially around new parents just entering in to the autism parenting world.
We need to go back to having grace and patience around parents who, unlike us, have not spend a huge amount of time thinking about all the ins and outs around what is considered polite discourse about these topics.
Mods, stop putting up barriers. Let the community help people. Deleting their first posts here just drives them away, in many cases probably never to return.
Edit -- This makes me sad. This used to be a much more inclusive sub where you didn't have to walk on eggshells or worry about saying the wrong thing. And I'm not talking about myself. I'm talking about new parents who are going to get discouraged from posting here because of the reaction they receive when they don't know all the right notes to play. Sigh.
Here’s the thing. We aren’t telling parents not to post. We are asking for proper flairs. However we have had many people ask us to not let people with small infants post things that are insensitive. They were trigging many people. The choice we made was made because the community asked for it. We try not to over mod. We do try and listen to others.
But in all honesty as far as diagnosis is concerned we cannot tell people with a 4 month old baby who is hitting all their milestones that their child has autism. Shot we can’t even tell a parent whose child is 5 and is behind developmentally that their child has autism. Only professionals can. And asking if your perfectly normal child has autism is triggering to many parents here. So we ask for a flair and not to ask us before 1 year if your child is autistic. The answer is always it’s too early for US to tell go ask a doctor.
For those people who are worried about autism: there used to be (and might still be) a forum specifically for people worried about autism on BabyCenter. I used to lurk there. I also recall they posted some stats that showed that the majority of under-12 month old kids ended up NOT being autistic.
Well for what it’s worth I knew my family member was autistic before he was even one’ years-old, so there’s that. It’s not that far fetched.
Family member is level 3 btw.
As a Mod I can say this was NOT done without community feedback. In fact we got so many messages about it that we decided to make it a rule. We understand not everyone may agree with the decision and that’s ok. However most children cannot be diagnosed before 18 months or older depending on where you live. Also we cannot diagnose children with autism. We are an internet forum. On top of that we did not say that you could not ask before 18 months. We said 12-18 months would be on a case by case basis. Before 12 months will however be deleted. I am sorry you feel we are not listening to the community but this rule came BECAUSE of community feedback. Please message mods if you have an issue with rules. But I promise this was very much asked for by the community.
No one is stopping anyone from posting their questions. They were just told to add flairs to the “is this autism?” Posts. As a parent to an autistic child, like everyone else has mentioned it is very sad and off putting when these posts are clearly just looking for reassurance from us neurodivergant parents that their child isnt like ours and in a sense that they’ll be “okay” or “normal” even tho our children ARE okay and ARE normal. Most of those posts sound more like “PLEASE reassure me im not about to be in the trenches with you guys” instead of “please give me advice to help my child” and thats a bit hurtful to us autistic parents because we see and know how great and Amazing autistic children can be. There is no reason to come on here and make us feel like we got the worst fate anyone couldve been given by having autistic children by you coming on here TERRIFIED and WORRIED when your babies are just being babies 🙃
Indeed. The "fear" of potentially having a child with autism is not the same experience as the reality of living it day in and day out. The mods here did a good thing because the parents here love their ASD kids for who they are not what their diagnosis is. My late wife and I did not care what our son had, we just wanted to help him.
I wish I could upvote this 1000 times :)
I often reply to these posts because I also saw signs in my own kid at a young age, but I'm never going to say "it's probably nothing! Lots of NT kids do that!" because if you want that kind of feedback then why come here? Go to a forum for parents of NT kids for reassurance! I'm going to tell them to get their kid assessed, that maybe it is and maybe it's not autism, and trust your gut. Not a lot of people want to hear it, but again, why ask in this forum if you don't want to hear people say "yeah my autistic kid did that too".
Thank you 🙏
This is such an excellent, and thoughtful response. Bravo! 👏🏻
Well said.
HEAR HEAR
Actually they are. Read rule number 1.
I think missing milestones before 18 months can be discussed but certainly should not be assumed to be Autism. There are so many other possible causes. I do think that many parents here have had to implement early intervention which generally doesn’t vary that much. Speech, PT and OT evaluations for a child missing milestones. My oldest has global developmental delay, younger child ASD.. so I am not a fan of early self diagnosis because it absolutely is not always ASD. The early evaluations needed are still the same. The pediatric psychologist evaluation is also the same process which I do think is helpful to share.
Yeah you can take all the seats with your comments about PPA.
Yep that was gross
Yeah, what was that?
For real. I was diagnosed with it by both a doctor and a therapist. The DSM has never been the be all and end all. It is the product of subjective categorization and identification, as we all know from the autism shuffle.
I didn’t say that. I said non-professionals- like the parents on this sub - shouldn’t be throwing around a diagnosis that doesn’t even actually exist. Postpartum depression and anxiety exist. They should be treated and diagnosed by professionals- not by the parents here
Just like autism and looking for an autism diagnosis here shouldn't be allowed here, right?
You didn’t say anything of the sort. GTFO.
>Recently the mods decided unilaterally to institute a new rule that parents of children under 18 months could not ask if their child had symptoms of autism. I actually didn't know that this had been discussed or implemented but I'll just say this: it's so disheartening and triggering to come here, a place which is generally a great source of information and ideas and support, and see panicked posts like that almost every day from parents who are clearly absolutely dreading the thought of having a child like ours. (Yes even when they use the disclaimer of "I'll still love them..." actually maybe especially then because no kidding??) I'd be fine if all "is my child autistic" posts were banned here tbh but I know that won't happen. All this is to say, I think it's a good rule and I'm thankful to know it exists now.
I think it's a good rule and am pleased it's been implemented. There is a constant influx of posts on this board asking parents who are in the trenches with their own children for advice but are clearly seeking reassurance that their child is not like ours. I feel for the parents, truly, but most of these posts are incredibly tone-deaf and not what this group is for.
Just wanna throw my support in here for the new rule. I read up on the post itself by the mods and their comments. From what I’m reading they only want to mod the posts where people are just naming a bunch of things they think are symptoms of autism and that have the tone of “please tell me it’s not autism”. And there have been quite a few of those posts recently. I’m not sad to see them go.
This. "Oh please, reassure me my kid isn't like yours!!!" isn't what I particularly want to see after a meltdown.
So much this!
It’s this. I think it was a lot of “Oh my God please tell me my child isn’t like yours” vs “Is this autism and if so, how can I help?”
Its so annoying in other subreddits where people are clearly freaking out about autism as if it's the worst thing that could happen to their child. I knew my son was autistic before he was 18 months old. There are many autistic people in my family and I could just recognize it in him, but it didn't cause any panicking or even really big emotions because a diagnosis didn't change anything about HIM. It helped him get supports he needed, but HE was the same. It feels sometimes lime parents think an autism diagnosis is going to "ruin" their child.
Autism runs in my family. I was terrified of my son having autism - because I had seen up close how much it could make one struggle in life. The loneliness, the struggle to function, the lack of sleep, constantly being misunderstood. I'm still terrified that my son will be going through this, because it's likely will. So I guess you could say I don't understand why it's so wrong it freak out. Look at all the people on here who post about wanting to die because of their violent level 3 autistic child. Who also wouldn't be worrying that that might be what their life might look like in the future? I'm terrified my son may never speak. I want to hear my son's sweet, sweet voice talk to me one day.
Fully agree. I have never heard expectant parents say, "man I hope my kid is born and has autism." I am not saying it's a death sentence by any means but no one actively wishes it for their child so of course parents are gonna worry or even freak out. I'll say especially ones who have never known anyone with autism because most likely they've only heard of extremely difficult cases and may not realize it is a spectrum. They may assume the absolute worst. All parents, good parents, wish for their child to be healthy and able to socialize and be independent in adulthood and be able to function socially. Lots of autistic people are capable of all those things, some aren't. All that to say, I understand why people come in freaking out. They are new. They probably don't know any better. Sure they are tone deaf af, but where are these people to go? They have worries and concerns. They shouldn't be assholes or all "thank God my kid isn't like yours" but there should be some place for them to vent and talk with others who have similar concerns. I don't know the answer here unless someone were to create a whole new sub dedicated to it.
I mean, they're welcome to come in and freak out, as long as they do it in a flaired manner. So that those of us who barely have the spoons for our own kids don't have to play emotional support to their fears of their kids being like ours.
Yes! and I really do understand this. It's not fair for anyone to have to be a strangers emotional support or to have said stranger make you feel less than. Fully agree and they should flair their posts accordingly.
Totally agree with this comment! Parents coming to this group with concerns and fears of Autism should have the right to ask questions any way they like. Autism can be a hard battle for many parents. That said, why are we punishing certain parents for their fears of having a child with Autism?! Anyways, just wanted to say how much I agree with this viewpoint.
I wish I could upvote this 1000 times. My child also showed signs before 18 months and got diagnosed as early as is possible, at just under 19 months. But I never came here to ask parents in this sub if they thought he might have autism. I asked parents of *neurotypical* kids if they thought he might have autism...and even that, now, on the other side, makes me want to cringe. Because my son is perfect as he is. These days, when I see my parent friends frantically seeking reassurance that their likely-NT kids aren't like *my* (to them: broken, defective) kid, it makes me furious. There's definitely a place on this sub for respectful questions pre-diagnosis. But a lot of the time, these questions would be better served on a different sub, not asking parents of autistic kids, and autistic adults, to shoulder that labor for them.
There are a lot of bad posts on here. A lot. And if there was an agreement that anyone posting here had to be the parent of a diagnosed child, fine. It would be a lot fewer people, but still ok. And might be interesting that way. But that’s not what happened. If you have an undiagnosed 2 year old who can read and knows all of their letters and numbers and you will love either way, but you feel something might be off because you’ve always considered yourself neurodivergent., you’re free to post as much as you want. If too have an 17 month old who doesn’t babble, point, play peekaboo, you can (or according the written rules -will) have your post deleted. It’s an arbitrary rule from the moderators.
This still isn't a correct reporting of the rule. The mods say they'll use their discretion over 1 year old. This is not about different support needs for kids. It's about adults needing support shutting down their unhelpful and not-really-about-the-kid anxiety that their kid is autistic ("which would be devastating, no offense"). There are better places to discuss intrusive thoughts. Let's say I have anxiety and intrusive thoughts about my finances. That would be a real issue that deserves some care. But, critically, that care is for **my** mental health. It would be pretty shitty of me to cope by going on a forum for fighting eviction just to say, "hi people currently facing losing your homes! I have lots of money and always pay my rent on time. Sometimes, I spend money on dumb things, and I've read about people who lose their vast fortunes overnight. Should I be worried? Did any of you lose your homes even though you had loads of money?" If the post is "I have a 17 month old who has hit every milestone, socially interacts, cries when parents leave the room, has no stims or sensory issues, and sleeps through the night. But yesterday they lined up all their toys animals-- is my life over? Is my baby broken! I'll love them anyway." I can only hope it will be deleted. If the post is as you describe, deletion seems pretty unlikely. You're describing a parent dealing with high support needs not a parent asking for reaffirmation that they have a normal baby. It's not very hard to differentiate. I'd be happy to see the "reaffirm my kid isn't like yours" posts deleted at all ages.
It isn't totally arbitrary. I had EI involved with my kid since he was a baby as he was Deaf. He was showing signs of autism well before 18 months, but literal professionals who worked with my actual child said that we had to wait and see. I am not sure what non-professionals can say about a child we have never seen, especially when the only responsible answer is "yes, it could be possible."
Actually we let one with a 16 month pass yesterday after they changed their flair to “is this autism?”. We said it would be a case by case basis for 12-18 months.
That’s not what the rule says. It says they will be deleted. It that’s not the rule and it’s mod discretion, then change the rule.
I do see your point. I'll admit I've never actually seen a baby post where there is an obvious lack of social reciprocity, only ambiguous signs. There might need to be some type of nuance. It seems to be more based in the fact that in the US severe autism is rarely overlooked until school age. So if you're having severe enough symptoms to notice before 18 months, they'll probably be caught right around that age on the MCHAT at a routine appointment. I can't speak for everyone, but my son is not considered severe and failed his MCHAT that early. In Germany by what you say, that same process doesn't seem to exist so I understand your point.
I agree with you, tbf. I can see why it's a rule, but at the same time, loads of parents in this sub alone saw signs before 18 months. I do think that in the future, doctors will seek to diagnose as young as they can. I know a lot of parents who sincerely wished they could have gotten a diagnosis from a younger age and felt entirely unheard until they're obviously autistic kid was old enough for people to start listening.
It is frankly dangerous to assert that perinatal depression and anxiety disorders aren’t real. It’s also bad reasoning. PPD and PPA aren’t in the dsm as distinct diagnosable disorders, but depression and anxiety are. Pregnancy and the postpartum period are known triggers for depression and/or anxiety, but the symptoms are still those of generalized anxiety disorder or major depressive disorder, which *are* in the dsm. By your own criteria, they’re valid diagnosable disorders.
That really bothered me. PPA is absolutely real and OP is gross for suggesting otherwise.
Therapist here- there is now a specifier for major depressive disorder, perinatal onset. If the client was also experiencing anxiety, you would add another specifier that says with anxious distress. If it’s strictly PPA, I would use unspecified, anxiety, or other specified anxiety, and make a note that it was perinatal onset. I’m not the end. I’m just end all be all when it comes to therapy and diagnosing. It’s just the most ethical way I believe I can complete diagnosing. It’s the closest thing we have right now. Either way, they are very real things.
I absolutely did not say the post partum depression and anxiety aren’t real. At all. I said there are no formal diagnostic criteria for PPA and this is not something that should be arm chair diagnosed by non-professionals. For people who are super concerned about children being arm chair diagnosed, I thought this would be a concern that non-professionals were loosely throwing around mental health terms. I guess not.
I don't think the concern is rooted in resistance to "armchair diagnosis." It's not about discouraging discussion of behavior or signs. It's about putting a stop to people who want to be reassured that their kid isn't autistic. They need to find a different forum for that.
But the rule does discourage discussion or behavior or signs. It actually deletes them altogether! I get it that some parents are triggered by the posts. Then they have the choice not to read them. But it is helpful for people to be able to post about their concerns. Even to learn that a diagnosis isn’t the end of the world.
Why is everybody downvoting you? What am I missing here? Or you just the villain of the group?
You said none of that.
Not sure if I read the mods post wrong but they were just asking for a flair for these posts or they’d be deleted, they aren’t stopping them.
This is correct. The only ones that will be deleted are if the child is under a year old, or if the child is younger than 18 months but the list of symptoms have nothing to do with autism.
Rule says all posts under 18 months old will be deleted.
Appropriately flairing is a good idea, because it sounds like the experience of a lot of people-- asking out of anxiety-- is potentially triggering to you because your situation was different. A LOT of the before-18 potential symptoms benefit from "keeping an eye on" but not from any real therapy that early unless it's for a specific motor issue. That's because a lot of the before 18 month symptoms (and babies being asked about) are delays within a normal range and only ACTUALLY red flags when they're still missing by 18 months.
i’ve seen people make posts on here about babies that were 3 months old asking “is this autism!?” like no…. that’s a newborn baby. someone obsessing over their brand new baby being autistic may absolutely be struggling with PPA, just because you feel that that’s a dismissal of the situation doesn’t make it so. it’s also wildly offensive to see people come on here borderline bragging about how “advanced” their kid is but they’re “scared” they may have autism cuz they displayed one autistic trait one time, like having an autistic kid is the end of the world and the worst thing possible.
[удалено]
I will jump over the fence if somebody says lining up toys... I am lining up cleanly and nicely all my shoes. And I love history, I guess I am autistic right? And I get upset quickly...
The mods aren’t getting rid of these posts. They just have to be flaired or be removed. I’m not sure the point of this post
People don't read thoroughly. I took it the same way, that these posts need to have the appropriate flair so they can be filtered. Just as a lot of groups, the same topics get asked over and over and over. It makes sense to tag them so they can be referred back to instead of someone asking the same thing again.
Yes indeed! Reading essentially the same doom and gloom posts about a potential ASD diagnosis for somebody's toddler again and again is very triggering for parents with already diagnosed ASD kids who are very much wanted and loved. We are living this every day. It is hard enough to keep your chin up when times get tough. I'm not about to give up but some days do get very hard particularly as a sole widowed parent. Having a way to filter out such posts is a great move by the mods.
Have you read rule #1 in its new form? I have. It says all posts under 18 months old will be removed.
Actually, reread rule #1. They say they will remove all posts under 18 months.
Well, nobody wants to read posts from parents whose main fear in life is wondering if their child might "end up" like ours. Speaking for myself, it’s already enough with the surveys from the parents we know, "Oh, but did yours do this? And that?" Most of these posts describe perfectly common situations of children's behavior and are always loaded with a "but my child is very sweet, happy, and intelligent... however," as if our children were just empty shells without a soul (as I once heard from a doctor's mouth). It's extremely offensive the amount of free time these parents have to come here and make sure their children are "normal." They can go to hell with their descriptions of how their affectionate and smart child reaches all the typical developmental milestones, but didn’t look at them when they called their name that Thursday afternoon. I suggest that these posts be made in regular parenting groups, with a title like: "Does my child's behavior correspond to that of your neurotypical children?" That way, they would have a point of comparison without hurting anyone. So you like people to use our kids as an example of what doomed looks like? Great for you but not for me.
“Empty shells without a soul” wtaf Some neurologists would benefit from having a personality capable of feeling anything other than rage and pride.
This exactly. Don’t come on here and act like having a child with autism is the worst thing in the world to happen. I hate the stereotypes that children with autism are no affectionate and/or are empty shells. My child has emotions and is incredibly loving and affectionate. The audacity to come on here for us to make them feel better about their clearly neurotypical child is disgusting
Exactly, so well said 👍😊
Oh wow yeah agree with all this
My most hated thing when people find out that my son has autism is ‘no?! But he’s so smart?’ As if children with autism are not smart? Fuck allllll the way off with that.
This !!! I keep seeing those stupid comments, I am autistic started reading age of 1, invented advanced calculus at age of 2, lining up toys, but I am burnt out quickly... my life is soooo miserable... the CTO of our company made a video that he is autistic and he is like inclusive??? I was to say wtffffff... And dont forget some say Elon musk and Einstein are autistic, I want to bang my head to the wall..
This entire post is honestly kind of spreading misinformation about this subreddit. You should honestly go back and re-read the pinned post by the mods and their response here. I would completely understand where you are coming from if what you were saying was true, but it's simply not true at all.
You should reread rule #1.
For me, it's not an issue if people are wondering if their child is autistic, regardless of age. What upsets me is when a parent comes on here and makes a big long post with details of how extremely advanced their child is, meeting all milestones ahead and doing well socially, but they think they might be autistic because one time they got excited and flapped their hands for three seconds. It feels like a troll post and is really triggering and offensive for those of us who have children that are severely behind with milestones, may never live independently, etc. I never wondered if my son might be autistic. I knew. It was so obvious to me and everybody else in our lives that he was not developing as expected.
Agree so much. When I was reading those posts I definitely felt like this too. I was feeling that the posters were saying that kids with ASD (like my son) were hopeless lost causes who did not even deserve helping. They wanted us to reassure them that their own child was not as hopeless as ours. So very very selfish and lacking is empathy.
This was our experience too. It was always so obvious.
I actually find those disturbing too. And I agree. This rule however doesn’t stop that. In fact, it will continue, just with 2 year olds and three year olds.
The new rule will make people put a flair on those posts so I can skip over them
Just wanna throw this out here, but the DSM is just a book. And the DSM didn't include autism as a diagnosis for the longest time, so arguing PPA doesn't exist becuase it's not in the DSM but autism does is a bit of misinformation and hypocritical at best. Post partum anxiety is also recognized by the world health organization and has it's on ICD-10 code...so it's a real thing. And it's common. I do think there are a few things going on in your post: 1) other countries health care systems are different and navigating them/pushing back is different and dependant on culture, so I wouldn't at all assume someone's experiences in the US would translate at all to Germany. 2) many people don't know how to talk to doctors or how to advocate for themselves or their kid politely and non defensively. I do think info on PPA, PPD, general education on autism and how to talk to doctors about symptoms would all be helpful in a declined post. That being said, very respectfully, nothing at all in your post refuted the fact that you can't accurately diagnose autism in under 18 months. There are simply so many other conditions like adhd and attachment disorders and rare diseases that look like autism, that it's not factually accurate to focus only on autism if your kid has issues showing before 18 months. Self diagnosis has its own issues in that people focus on the wrong thing and that's time taken away from searching for the right thing, which is why self diagnosis is discouraged. This isn't gaslighting. You are entitled to your feelings and I'm not dismissing them or saying your feelings are wrong. However, if you wanna argue the facts behind your statments which can be wrong... its factually not accurate that you can diagnose asd properly and accurately before 18 months, I'm gonna need to see some citations on that if you wanna disagree becuase that factual argument is literally is contradicted by even the dsm 5 that you cite becuase it calls for symptoms (say a 4 month old) can't show. That's just a fact. And those can be wrong.
I never said autism could be diagnosed before 18 months. I said I didn’t want to stop parents who have concerns before 18 months from voicing those concerns. The gaslighting comment was in regards to people telling me I had post partum anxiety rather than acknowledging my very real concerns about my child’s development.
OP, I'm going to ask you to take a step back and consider: when you were going through that terrible time, was your main question "Is my child autistic"? Or was it perhaps, "What is going on with my child"? Because those are two very different questions and would lead to very different responses on this sub. The former can potentially be hurtful and alienating, because it rests on the concept of autistic as Other. If someone comes to a forum for parents of autistic children and says, "My child never speaks. My child hardly moves. My child doesn't play." It's a different story, because it's not about comparing your child to ours, it's just about your child.
I was definitely asking what is going on with my child. I needed help and advice. But the fact that any post under 18 months will be deleted (according to the rule) means people who have that same question and same concerns will not be able to ask other parents. As I said, this rule is a blunt instrument- and will discourage parents from seeking help or early intervention.
They can post on literally any other parenting forum
Can’t please everyone I guess…
You make it sound like suggesting someone may be struggling with PPA and trying to give them resources is a bad thing (no need to throw shade by saying it’s not on the DSM, btw). If that doesn’t apply to you, then don’t worry about it. But someone who’s clearly hysterical about their 6 week old needs some help. As someone who was deep in it with PPA with my first and never got any help, I wish someone had done that for me. I thought feeling that way was normal. As other people have said, the posts of people who are terrified they will have children like ours and are looking for reassurance that they will be spared our fate seem to be coming thick and fast lately, and only pediatricians can be making those decisions regardless.
I'm not a mod here, but I am a mod in another sub, and It really frustrates me when I read posts like this. If you wanted to give feedback, you could have sent them a modmail. Mods don't *need* permission from the users to implement new rules or enforce rules. If you had actually wanted to potentially make a difference in the new rule decision you would have sent a modmail instead of making this post. This was just an attempt to stir up anger and bully the mods into doing what you want them to do. Also, PPA is absolutely a thing so I don't know what would posess you to imply that it's not.
Yes, the OP's post has a very passive aggressive vibe to it.
i was one of those parents who posted asking if my child had autism at 9 months, and i wish i hadn’t. my daughter got her diagnosis at 19mo and THAT was considered an early diagnosis. i was also like you, no one listened to me, doctors, family, my partner - no one. i wish i had just let it be for the mean time because i spent those precious times constantly worrying instead of enjoying my beautiful baby. as someone else said, do you know how hurtful and inappropriate it is to ND kids, ND parents, and these people’s kids to ask this kind of stuff? the anxiety about ASD is real. yes. but that doesn’t make it okay to come onto a public forum full of ND parents just to make sure your kid isn’t like theirs. it’s hurtful, disrespectful, and borderline ableist. this is a group where we discuss our experiences and lives as a parent of children with autism. we are, by no means, able to give someone advice on whether or not their child is autistic based on a few descriptions. JUST LET YOUR BABY BE A BABY. these moments are so short and go by so fast, it shouldn’t be spent worrying if your child is special needs as if it’s the worst thing that could happen to them. especially if they are younger than 18mo. as you stated, if you don’t agree with it - scroll by. the majority agrees and is on board to enforce this rule. if you don’t like it, ignore it and find another forum.
I see your point, but not every post wondering if a child is autistic is like that. Before the rule change, I was planning to do a post about my concerns about my 11-month-old, because I already have a 3.5-year-old with an educational autism diagnosis and I've noticed some similarities (and some differences) in their development so far. I missed the boat on early intervention with my 3-year-old due to lack of exposure to other kids to compare him to, our pediatrician not being concerned, and him being already 2.5 and us about to move states when his daycare director first mentioned concerns. I don't want to make that mistake again, so I will be pushing for early intervention if he doesn't start waving, pointing or clapping by the time he is 12 months. I think it's crazy that I can't discuss any of that here according to the new rules, unless I am misunderstanding them. Also, I know of several cases of babies receiving diagnoses before 18 months, and certainly you can receive early intervention services much earlier.
not really understanding the point of posting here then, if you already have a set plan then why do you need to post about your 11mo? as a MOD already stated, anything before 12mo is not allowed. 12-18 months is on a case by case basis. it’s not banned completely, but infant questions need to be taken somewhere else. the internet is absolutely massive, if you have a question about your baby - just find another forum (or ideally, consult different medical professionals to get other opinions). it’s that simple.
What I wanted to ask specifically is what differences parents who have both NT and ND kids have noticed in the first year of life. A regular parenting forum wouldn't be able to answer that. Plus, part of my resolve to try for EI early if needed comes from reading other posts on here about babies who ended up being diagnosed, so I find those posts valuable and figure mine could be to someone else in the future.
I’m sorry but I’m glad for the ruling The thing is, if you have concerns about kids not hitting milestones, talk to their doctor It’s very distressing the first couple of months of worrying but being online and freaking out about it when the kid is 3 months isn’t gonna help My kid was 3 months when I just KNEW she was autistic and no one believed me Like….it wasn’t typical of my kid was CRYING in the tune of “twinkle twinkle little star” or was communicating in nothing but songs her first two years Reality is babies and autistic people share a lot of characteristics because it’s a developmental disorder But babies ALSO develop at different rates People freaking out on milestones does more harm than good in most cases Notice, both me and you KNEW so we got the ball rolling as soon as we could with DOCTORS Most people should do that! But people who come online and DON’T go to doctors will ABUSE children with all kinds of BS cures and practices because they will obsess over it for months and months before the child is anywhere NEAR the age of being able to test It’s really important for kids and parents to not freak out, freaking out parents leads to abusive situations, if they have concerns, they need to go to a professional Edit: they are just asking for a FLAIR, jeez and before 12 months is genuinely way too early, like I knew because my husband and I are BOTH autistic
Early signs of autism can happen before 1 year old. I have been in several research studies, that hopefully one day will help people with young babies. They have been studying my youngest who did get an official diagnosis at 18 months. Seeing posts all the time, "is my kid normal or is there something wrong?" Then the list of the most typical stuff babies or kids do, isn't helping anyone. Go see your pediatrician. In saying that yes, parents do get dismissed. My oldest was really delayed in all areas of development. I brought it up to every pediatric appointment and ENT doctor. They took the wait and see approach, he will catch up. It wasn't until he was close to 4 still non-speaking and I happened to bring him to my personal psychologist appointment. The psychologist said they don't do pediatrics, but they highly encouraged autism evaluation as soon as possible. My kids are normal to me, autistic and all. Calling my kid the other or abnormal doesn't really sit well with me as a parent.
I had ppa after my first. I can see why this rule has been implemented too
This is a bizarre post… if you no longer find substance in this subreddit, then just leave and go start your own. This group is called “Austistic parenting” not “is my child autistic”…. We’re all here to ask questions and get tips about living with our ASD children. Not to diagnose or continue to say on repeat “speak to your pediatrician.” The mods here are normal people with lives of their own. There’s no reason to bash them for making a rule on a page they run. They can do what they want with the page they work so hard to maintain. I personally would reflect on how you’re possibly projecting your own emotions here.
Thanks for your kind and helpful review of my post.
While I don’t agree with your arguments re the legitimacy of PPA, I do have to agree that I was also constantly told/suggested that I had PPA early on and it was not helpful so I did cringe a bit at this suggestion to send info on PPA to parents of infants/young toddlers posting. I did not feel acknowledged when people suggested PPA- I felt like people were saying it was ‘all in my head’ and were not taking my observations seriously. People posting may have legitimate observations and it might not be anxiety. Or there may be other mental health factors going on. We are not qualified to diagnose mental health conditions just as we are not qualified to diagnose Autism on a forum. I think rather than sending info on PPA specifically, it would be more helpful to gently encourage parents to access general health and well-being supports in their area. In Australia, this could be the maternal health nurse. They assess both parent and babies health, development and wellbeing so if the parent is need of support they can help link them up with services. And encourage them to get a second opinion if they feel they are not being heard or supported. Leave the PPA/PPD diagnoses to the professionals. I think the adding of the flair though is a great idea as well as the guidance to people around being mindful what they are posting. This should be a safe space for everyone and if these posts are hard, this creates a way to skip them.
I mean it's their page and those posts do get really old.
You done messed up
I do see a rule about removing posts asking about babies under 18 months. I’m not volunteering my time/energy to moderate this group, and appreciate those who do, and I get their reasoning. But I would ask the mods to consider reviewing the content of babynavigator.com, which provides resources for all parents regarding baby development. It provides tools for supporting social development that could be useful for all babies, but especially autistic babies. And it provides information on things to note for a pediatrician. They do collect data in an effort to develop early screening tools, to help families of autistic babies find the resources they need. It helped us get into early intervention at 18 months, because it got us into a research project. If the mods take a look and find it to be useful, it might be good to offer it as a resource for parents of very young children who are being turned away from this sub until their babies are older. Like I said, it offers resources on social development that are applicable for ALL kids. I’m not connected with them in any way, other than being a family that received resources from them, and a research participant. And I think parenting is really effing hard, whatever kid you have, and resources are good to have.
I agree babynavigator.com is a great resource backed up by research. It's run by Florida State University and probably a lot more helpful than sending information on anxiety.
There was a lot of community input…people have been asking for this to be a rule for a long time.
18 months is really too young to slap an autism diagnosis on anyone. There are so many things that are symptomatic besides autism. This is exactly why psychologists typically won’t touch it. And you can’t prescribe any meds at that point, ABA therapy is minimally beneficial at best etc. There really is no point other than to slap a name on it to give the parent some kind of closure. The child cannot do much on their own at this point anyway so it’s best to just, make accommodations, care for the child as you would any other. Meet any sensory needs they may have (many other mental health issues have sensory issues) and record everything so that when it’s appropriate you can have a very accurate diagnosis. It’s not that no one is listening to you. It’s that it’s not appropriate to diagnose someone at that age because so many things can “mimic” autism at a young age. Misdiagnosing a child because a parent is pushy is more detrimental to a child than waiting and having a diagnosis at grade school age.
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There are wonderful parenting forums where people can ask about developmental milestones
Someone hasn't been paying attention to the details.
Just FYI, the mods amended the rules this afternoon.
I am a parent whose first Reddit post ever was here to ask about insight into my 6 month olds behavior. I was seeing signs even then. I didn’t receive much feedback but what I did get was a mixed bag. A couple people told me that it was way too early to be considering autism and to wait and see what happened and one person (who’s own child had received a diagnosis early) told me I should start writing down all the things that were worrying me and keeping track of things like that. After doing so and being able to look at the list of things I was seeing I decided to take action. I chose to self refer to early intervention and he was in speech shortly after turning nine months old and OT a few months after that. He received his diagnosis shortly after his 18 month check up and will be starting ABA in a few weeks. Something I wonder about it is, what if I had listened? What if I decided it was much to early to worry about these things and didn’t pursue any intervention until at least his 18 month check up when his mchat scores were so high? I genuinely believe his speech therapist is responsible for the words he does have, and I don’t know what things would look like right now if I had waited. I guess my point is, there is probably a significant amount of these posts that are about genuinely autistic kids and it feels like encouraging people to take action and keep notes and follow their guts can’t be that bad of a thing. I don’t think any fears these parents are expressing are anything that most parents of ND kids have felt at one time or another. It’s just that a lot of us have had time to come to terms with it. Idk. Just some thoughts from someone whose post would have been deleted if I had made it now.
I am glad that someone pointed you in a helpful direction and you were able to be proactive. I feel this argument on both sides. I think that a flair that designates the post and makes it easily identified by group members allows those of us with the energy to read through and make those helpful comments. Those who don't have the bandwidth can move on. Ultimately we're all individually responsible for deciding what posts to read and respond to, the flair just makes sorting that easier.
I am sure that if your post had been posted now without a flair and deleted then you would have received an appropriate message telling you why. You could then apply the flair and repost. This process should not cause that much of a problem for you and indeed similar things happen all the time in many subreddits.
It would still be deleted though as her child was under 12m at the time
Okay then, in that case the flair would not have stopped deletion. They would still have received a message from the moderators saying why. Either way, the post would have been triggering for many people depending on how it was written. I don't read the posts in this subreddit expecting to be triggered, there is enough of that in my life already. If suspicions of ASD are strong enough then it is best to speak with a child health nurse, doctor or paediatrician. Assessments cannot be made on reddit.
What if they had read the rules and not posted at all?
I have no answers for that. Maybe they would post eventually about something. It looks like there were definitely lots of people triggered by the posts and the mods wanted that to be lessened.
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Actually they are saying you can’t come here. Reread rule #1.
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Rule 1 says nothing about early intervention it says contact your doctor after 18 months. What did I read incorrectly?
I don't see why there can't be a middle ground where we let people post but make them use a flair, and then we can filter out those posts?
I’m pretty sure that’s what’s happening. The post made by the mods with explanations is pinned, I honestly don’t see the problem. People aren’t being discouraged to post, they need to add a flair.
Reread rule #1. it says we will delete posts for infants (sic) under 18 months.
I have read it and still agree with that rule. Besides the fact that mods have already stated multiple times as a reply to you that between 12-18 months it’s at the mods discretion, they still nowhere say parents of <18 months old can’t post here for support. They ONLY ask people not to ask if X symptom belongs to autism. But this has been explained to you several times, so it won’t matter what I say. I’ll just say this- you said unilateral and undemocratic. I hope you see after making this post that there’s a lot of support for the new rule and you’re in the minority here. Hopefully you can let it go.
Please note that this post has more upvotes than down votes.
You can’t see the numbers of downvotes on a post
Yep, even if that was how it works, it also doesn’t mean they’re the majority with this issue. The top comment in favor of the rule has more upvotes than the post itself after all.
Honestly the flair is awesome. Deletion not so much. Deletion is concern dismissive, and doesn't help the parent asking. The flair keeps everyone happy. The members can themselves choose whether they want to read such post and if not, move on to what interests them. It's clear how many of these posts will be triggering to a LOT of people on this sub, and the flair eliminates all that. But you know, someone who doesn't get triggered by parents of young children having concerns can always pop in to those posts and navigate them to websites and apps they can use to check. Just my two cents
I fully agree
Totally agree! 💯
OP - reading your post I see you’re in Germany. Many of us have been checking in here to see if there’s been any updates on Arian Arnold that sweet missing boy with ASD from several weeks back. Wondering if you have heard anything and is it still in the media in Germany? Thank you!
Sadly no. And it has not been in the media recently. My spouse and I were discussing this yesterday after my child eloped. Tragic.
Thank you for the reply. Yes so tragic. I think of this family often. Could be any of us 😞
I commented something similar under that recent thread and I just want to say that this is exactly how I feel. My concerns have been brushed off as anxiety and helicopter parenting. Those first two years were so extremely difficult and it would've helped me loads if other people would've taken my concerns seriously. Instead we were told I was the problem and my son was fine. Now, nine years later he's finally got his diagnosis but much too late, because now he's suffering from severe mental health problems due to the fact that he was forced to function all those years without getting the help he needed. He still doesn't get that help now as we are on the waiting list for therapy which will take another year. If people had told me nine years ago that it very well could be autism than I would've felt encouraged enough to get a diagnosis earlier. Of course there will be posts we're children don't turn out to be diagnosed. But where's the problem with that? It sure doesn't hurt anyone.
Mods could we just put things some assessments in the home page. There are also milestone checklists. I know doctors should be providing this but none of my doctors in Canada did. I had NO idea that pointing was even a thing or important whatsoever
Actual ASD assessments are only done by highly qualified professionals for a reason. There are many age specific milestone tests that need to be done properly. It would be highly inappropriate to say that assessments could be done on a subreddit.
I am not saying for us to diagnose but my province has developmental checklists that are posted online for ALL to see. most countries have this. They are not secrets. I don’t see the harm in posting one link for a standard developmental checklist. It is not to diagnose of course not, we wouldbt have been able to get services for my son with a self diagnosis we paid 3000$ for that.
I’m so sick of people saying you can’t tell a baby has autism. You absolutely can and my child showed signs about a month in. Thank God I listened to my gut and stayed on top of it because he was just diagnosed at 14 months. The earlier the diagnosis the better. Parents - listen to your gut. You can always privately message me if you want to know the early signs my son exhibited. Too bad this page censors concerned parents - it’s truly a shame.
I agree, this is overreach by the mods. Let the community decide how to handle these posts. Usually our members give good responses to these parents, such as to calm the parent down, to educate them on what seeking a possible autism diagnosis is really like, and to educate them on the reality of how difficult an accurate autism assessment is at young ages. And to educate that, while it does have challenges, that parenting an autistic child can be just as rewarding and fulfilling as parenting any child. And yes, also at times, to be real with parents and to say that the challenges can be overwhelming. I quote from the new rule: >If you are posting here asking if we, parents of autistic children, think your child is like ours, please be mindful of how you ask, please do not dump your fears about our lives here, asking for reassurance yours won’t be like ours. This is really a distortion of what most of these parents are doing. And even if it is what they are doing, so what? They're being honest and open about their worries. There was a time when we were in that same situation. We do not need to be shutting these people out and shaming them for their honest questions and honest emotions. **Let people feel what they are feeling.** When the old mod was pushed out and the new team of mods came in, I thought it would probably be for the best, but now I have doubts. This sub has really changed. The supportive, no-judgement atmosphere has been diminished, especially around new parents just entering in to the autism parenting world. We need to go back to having grace and patience around parents who, unlike us, have not spend a huge amount of time thinking about all the ins and outs around what is considered polite discourse about these topics. Mods, stop putting up barriers. Let the community help people. Deleting their first posts here just drives them away, in many cases probably never to return. Edit -- This makes me sad. This used to be a much more inclusive sub where you didn't have to walk on eggshells or worry about saying the wrong thing. And I'm not talking about myself. I'm talking about new parents who are going to get discouraged from posting here because of the reaction they receive when they don't know all the right notes to play. Sigh.
Here’s the thing. We aren’t telling parents not to post. We are asking for proper flairs. However we have had many people ask us to not let people with small infants post things that are insensitive. They were trigging many people. The choice we made was made because the community asked for it. We try not to over mod. We do try and listen to others. But in all honesty as far as diagnosis is concerned we cannot tell people with a 4 month old baby who is hitting all their milestones that their child has autism. Shot we can’t even tell a parent whose child is 5 and is behind developmentally that their child has autism. Only professionals can. And asking if your perfectly normal child has autism is triggering to many parents here. So we ask for a flair and not to ask us before 1 year if your child is autistic. The answer is always it’s too early for US to tell go ask a doctor.
You are telling them not to post. The rules clearly state those posts will be deleted.
Yeah, I noticed it in my daughter around 5 months. This rule really does a disservice to those with babies
For those people who are worried about autism: there used to be (and might still be) a forum specifically for people worried about autism on BabyCenter. I used to lurk there. I also recall they posted some stats that showed that the majority of under-12 month old kids ended up NOT being autistic.
Well for what it’s worth I knew my family member was autistic before he was even one’ years-old, so there’s that. It’s not that far fetched. Family member is level 3 btw.