I have very pronounced FAS facial features (never got a diagnosis, post Soviet country, different times). Very droopy eyelids, underdeveloped jaw, ears too low, short height, of course flat undernose, non existent upper lip etc. Suffice to say I’m objectively very ugly (I’m an adult woman now). All my life, in every school I was relentlessly bullied for my looks. That added to the severe abuse and torture I got from my mother made every second of my life painful. Anybody else was bullied for their FAS looks?

I am looking for resources for spouses of those with FASD. It seems like most resources are targeted towards caregivers, parents, and those with FASD themselves. It feels very lonely living as a spouse because no one else truly understands what it's like to be a spouse in this situation. I'm not trying to say it as a bad thing. It's just that this condition brings a unique set of challenges, and therapy has never really worked, especially because on top of it, I myself am autistic, and we often clash because of our differences in neurology.

ETA: Would anyone be interested in creating or helping create a sub for spouses? Bonus points if the spouses are also ND, but it's not necessary.

Hello , my son was prenatal exposed tp alcohol and drugs . We have him since he was out of the hospital with 9 days . Even we were aware he may experience challenges we decided to help him and adopted him since his bio mom passed .we have bio children 36 + ( 4) so we have experience . He has mild language delay and sensory may be a future adhd . Some boundaries issues that even with aba and therapies since 18 months have improved but we aim to make him succed . Looking always how to help him, i read in Russia they treat the cause with Semax Selank Cerebrolzin in kids youung as 4
Please if someone has info is appreciated
I am a concerned mom afraid of what may happen when I wont be here . So wpuld like to give him all the chances . We believe in neuroplasticity . We understand what was damaged cannot be heal but new paths can be created .
Always investigating and researching how to help him
Thank u for your time reading

Hello All. Supporter here. I wish to learn about FASD to better understand my best friend and what it's like living with FASD.

My adopted younger brother has FASD, he is about to be 16. The doctors warned my parents early on that the teens would be the worst years, and boy were they right. Looking for advice from Adults with FASD how to best support him. Biggest issues are impulse control and like just doing crazy things a “normal” person would never ever think of doing.

Hello, I’m 28F (almost 29). I don’t know how common my situation is. My dad (68M) has always had a whole slew of mental health conditions that it just doesn’t seem possible for one person to have: ADHD, developmental coordination disorder, sensory processing disorder, narcissistic personality disorder, antisocial personality disorder, anxiety, depression, OCD, and possibly other stuff. He was a very volatile man. He could never hold down a job. He would abuse pain killers every so often. He was an intelligent man but everything else was out the window. Yes, he was verbally and emotionally abusive to me and my mom (she divorced him when I was 12-13-years-old). He would be absent from home for a long period of time. Eventually, my mom told me that his mother did admit to drinking while pregnant with him because they “didn’t know better” then. I myself have ADHD, developmental coordination disorder, sensory processing disorder, anxiety, and borderline personality disorder. My mom didn’t do anything harmful while pregnant with me, no alcohol, no drugs. She’s never been a drinker. I don’t know if my paternal grandmother damaged the DNA or if my proneness to mental illness is just intergenerational trauma from my father trying to raise me when he had unmet needs himself. He was always trying to pretend to be normal but the spoon would always drop at the least expected times. I feel bad for him but I know that I am better off without contact with him.

Hi all,

I posted recently about my stepdaughter with FASD and the meltdowns she had at our house recently. She ended up staying at our house again this past weekend, and it was so heartbreakingly difficult for all of us. I’m not really looking for advice, I just could use some support.

Let me preface by saying that I know she doesn’t have meltdowns like this because she hates us or that she’s doing anything out of spite. I know this isn’t about us. I understand that 3 weekends in a row away from her mom is A LOT, especially since we live 3-4 hours away.

However, to say this past weekend was tough would be an understatement. Actually, it was hands down the worst weekend we’ve ever experienced with her. She had a complete meltdown the ENTIRE weekend. I am not exaggerating when I say that she cried morning, noon, and night for nearly 4 days straight because she wanted to go home. She would wake up and cry. She told me over and over to take her home. We got nothing done because she cried and didn’t want to do anything or go anywhere. She cried when she woke up from a nap. She refused to eat. She refused to play. She just repeated herself over and over and over and over that she wanted us to take her home. She called my fiance by her stepdad’s name, something she’s never done before.

The worst of her meltdowns happened on her last day. She was asking to put on her shoes to leave, asking what time it was every 5 seconds so we could leave. I told her that if she took a quick nap, I’d wake her up and she’d be on her way. She responded by throwing herself onto her bed and screaming out in agony, flailing and kicking her feet. I’ve never seen or heard anything like it. She sounded like a dying animal.

I am trying to be patient, to be empathetic, to understand that being at our house was too much for her and that she desperately missed her mom. But it still hurt. It hurt to see her in that much distress. It hurt to see my fiance so upset. It hurt for everyone. She wasn’t like this before she started her medication, and now any slight change to her routine throws her off completely. I guess I just wasn’t prepared for her to spend 3 weekends in a row getting worse and worse. She became unrecognizable. It was so hard to watch.

I’m trying to remember that this is just how her brain works. I’m trying to adjust my expectations, even though she was a happy kid 4 months ago. I’m sad because we don’t think she will be able to come to our wedding in a few weeks since it is in a new place and she will be around people she doesn’t know. She had a meltdown at my bridal shower, so I can’t imagine what a new place will do to her. Of course we want her there to celebrate, but if it is only going to cause her great discomfort and stress, then I don’t see the point in putting her through that. No picture is worth watching her in agony for my own sake. The reality of that makes me so sad, but we need to consider the fact that now that she’s getting older, being away from her routine and her mom is very destabilizing for her. If she doesn’t want to come to our house, then I don’t see the point in forcing her and making everyone miserable.

My fiance and I are at a loss and deeply sad by our inability to console her. We’re so exhausted. I want to give her the best life I can, but the custody arrangement and the distance means that it will always be a struggle. It is what is is.

I love that little girl so much, and I’m just sad by the reality of the situation. Maybe things will be different if she comes over in a few weeks or month, but I’m trying to be realistic. Her mom wants us to have her every other weekend again, but given the circumstances, that is not going to work, especially since my fiance is going to be working Sundays again, and I don’t want to alone with her til 6pm getting screamed at to take her home. That’s not fair to her or us.

I don’t know what to do or where to go from here. I knew from everything I’ve read that her emotional outbursts would get worse with time, but I guess I wasn’t expecting it to happen so soon.

We’re going to do what we can to just keep moving forward, but it’s hard.

Any kind words would be so appreciated. ❤️

Kid is almost 10. Takes over an hour to fall asleep and then does not wake up for almost 11 after that. We've done pull-ups until now. Partner thought we could try, but kid is waking up soaked every day and I'm tired of the laundry. Had anyone actually had success with nighttime potty training? Is it worth it? Or do I just keep buying pull-ups?

So I have fas, I don't have any physical health issues from it, I only deal with the brain part of fas. I am 18F, quite functional in society aside from not understanding things extremely often. I have been reading about fas and searched up the life expectancy and it was 34. This has scared me immensely even though I do not suffer from any physical health issues related to fas. Will I be ok? I need harsh truth

Hi all!

I am about to become a stepmom to a very wonderful and sweet little girl who has FASD. She is 9 and has recently been having MANY issues with mental breakdowns, particularly around not getting her way.

A little background:
-Mom had her young and didn’t know she was pregnant and drank often/went on roller coasters during her pregnancy and did not receive any prenatal care
-Stepdaughter lives out of state with mom (~4 hours away), so we don’t get to see her much except for planned weekends
-She struggles with memory the most, as she is unable to get any color except for her favorite color (pink) correctly
-Her school said she is making zero progress in learning, so her mom got her on 100mg of Quelbree, which she’s been on since March of this year

She is a very sweet girl, and I love her to death, but she has recently been getting very out of control, and I believe this medication is causing her to become aggressive and withdrawn.

A few things that have been happening ever since she’s been on medication:
-Intense irritability
-2+ hour meltdowns when being told no, especially if we are out in public, and she will cry and scream that she wants to go home until we do
-Saying “no” to everything she’s told to do. For example, she had a 30 min meltdown after she was told to brush her teeth. She had a 2 hour meltdown after being told to wait before she started to eat.
-Extreme mood swings with random crying out of nowhere, but obviously she doesn’t have the vocabulary to explain why she’s upset, so there’s no way to comfort her
-Becoming socially withdrawn when around others and will cling to only my partner and me

I’ve been trying to educate myself as much as possible about her condition, and while I understand that the emotional dysregulation would start happening, I guess I just wasn’t prepared for it to happen to suddenly. Her mom says to “just let her be the boss!” which is not something that’s going to fly in our household. There’s no way I’m letting a 9 year old run my house. I do wonder if that might be contributing to her becoming more and more bossy every time we see her.

Her mom also says that she’s not going to switch her medication anytime soon, so I guess my question is: how can I best support her when she’s triggered? I’ve been trying to be mindful that shes mentally about the age of 3-4, so I’m trying to meet her where she’s at, cognitively speaking.

I know every kid is different, but does anyone have any advice or suggestions for navigating the meltdowns? As someone who also went back and forth between 2 houses, I understand that she’s always going to have some sense of instability when it comes to living in 2 places. I just want to help make her time away from her main home as comfortable as possible while also maintaining appropriate boundaries around her outbursts and defiance.

Any thoughts, words of encouragement, book recommendations, or anything else would be greatly appreciated. ❤️

Hello,

The Thrive FASD Lab at the University of Rochester is running a program that helps young adults with FASD work towards achieving their goals.

This is the perfect opportunity for young adults with FASD to improve their goal-setting skills. The program involves real support from the community to assist you through this journey.

Not only does this program guide individuals toward a goal of their choosing, but it will also be published in a journal to raise awareness among others. None of the data we collect will be traceable back to you.

You can participate if you:

- Have FASD

-Are 18-25 years old

- Live in the United States

Click the link below to take action toward your goals now!

Know someone who would be a great fit? Share this post!

https://studypages.com/s/thrive-study-helping-young-adults-with-fasd-reach-their-goals-608917/

So I've met a guy who tremendously helped me to understand my own childhood trauma. He is a divine force

​

I have come to understand that he has fas.

I told him and his response was "but my mum isn't a drunkard"

​

I never wanted him to feel like that is to insult his mum

​

​

Anyways he never got help rather landed in prison and thus developed horrible anger issues etc.

​

I wish I could send him that one resource that isn't insulting him but picks him up where he is. He's 42.

​

He's in Africa right now, doesn't have much Internet and was just deported from Germany .

​

He copes with cannabis a lot...

I posted this in the AskParents sub, but it was removed so I'm posting it here since this is a FASD sub. But for context, I'm a neurodivergent adult with FASD, and I still live at home with my overprotective, controlling parents (they're my adoptive parents, not my biological parents). When I post or complain about my situation or controlling parents, some people do side with me since I'm an adult but there's always people who also side with my parents and respond to me as if I'm in the wrong for wanting to be a normal adult or as if I'm a teenager who thinks they're grown rather than a literal adult who is grown. And I don't understand those people. And yes, I always mention that I'm an adult when I post about my situation.

​

And people who knows us in real life absolutely sides with my parents and sees my mom as a selfless mom who took me in and sees me as being in the wrong just for wanting to live like everyone else my age (just for wanting to fall in love or pursue my dreams I've had since high school). But my mom taking me in is literally why I'm not allowed to live a normal adult life (why I'm not married, why I don't have kids of my own, why I didn't get to go to college, why I didnt get to pursue any of my dreams) because I was raised by someone who sees disabled/neurodivergent adults as "forever children" and who doesn't believe disabled/neurodivergent adults should be treated equal. I understand not all parents are like this because a lot of parents treat their disabled/neurodivergent adult kids as equal adults and don't stop them from doing any of those things. Anyone can take in and raise someone else's child and anyone can give birth to a child and raise said child, but not every parent keeps that child from being an adult once the child turns 18 (even if the child is disabled or neurodivergent). There's so many people I see online with Downs Syndrome and Autism who are doing amazing things with their lives (some are even married or own their own business) because they were raised by parents who didn't force them to be identified by just their disability and who saw past just a disability.

​

Also taking in and raising someone's else's child shouldn't give you a free pass to shelter and infantalize the child once they become an adult and then they're seen as "ungrateful" because they're mad you won't let them grow up. If taking in and raising someone else's child doesn't give a parent a free pass to be sexually abusive or physically abusive because "at least they took you in and raised you and put a roof over your head" then it shouldn't give a parent a free pass to shelter and infantalize a disabled/neurodivergent adult. And yes, I see sheltering and infantalizing disabled/neurodivergent adults as another form of abuse (and I'm not the only one who thinks that way) because it can cause trauma, depression, and other issues just like sexual and physical abuse can. After all, we're talking about not letting an adult grow up and everything that comes with that (their freedoms and rights taken away and forcing them to let go of their dreams and not giving them autonomy and agency). We're not talking about telling teenagers (who can do what they want when they're 18 anyway) what to do, which is normal. And I don't care that the intention is good. The road to hell is paved with good intentions and what should matter is what it does to someone mentally and emotionally. In other words, if taking someone in and raising them doesn't outweigh sexual or physical abuse, then taking someone in and raising them shouldn't outweigh sheltering and infantalizing them once they turn 18 and especially not when they're well over 21.

​

I even had someone in the Christianity sub tell me one time, "Shut up, you're just mad you can't do whatever you want," as if they were responding to a teenager who thinks they're grown instead of a literal adult that is grown (yes, I mentioned I'm an adult in my post) or as if I'm mad because I can't be a whore and do drugs. 1) I'm a literal adult and adults are supposed to be able to do whatever they want within reason and as long as they're not hurting anyone or doing anything illegal (why you think teenagers can't wait to turn 18?) and 2) you know what, I am mad I can't do whatever I want because not being able to do whatever I want means not being able to experience falling in love since my mom won't let me date (even if I was to date a fellow neurodivergent person), not being able to vote (which is supposed to be a human right for Americans), not being able to follow and pursue my dreams I've had since high school (which includes being a professional poet, freelance journalist, and documentary filmmaker and yes those are things I still want to do to this day). I'm literally not able to do anything with my life or make anything of myself because my mom doesn't want or allow me to grow up and when I do stuff behind her back (such as posting poetry online behind her back), some people judge me for that as if there's something wrong with me wanting to do something with my life or make something of myself (knowing full well that if I ask her, she'll say no and then if I "obey" her, I'll just continue feeling like my life is empty with no purpose or meaning).

​

If you wouldn't tell a sexual abuse victim or physical abuse victim to "Shut up, you just don't want to be molested or raped" or "Shut up you just don't want to be beat," then don't tell a literal adult that's complaining about parents who won't let them live a normal adult life with dreams and aspirations "Shut up, you just mad you can't do whatever you want."

​

And before anyone says something about how I'm living under her roof, it is not by choice. She doesn't even want me to move out and if I tried, she'd accuse me of being "ungrateful" and "stabbing her in the back" because she's my adoptive mom and she'd see me as a kid moving out because I don't want to follow her rules after everything she's done for me instead of seeing me as a literal adult moving out because I want to be independent and be like everyone else my age.

​

I also feel like even people with other disorders or disabilities (like Autism or Down Syndrome) don't fully know or understand what it's like to have a disability or disorder that was literally caused by another person's actions, and neurotypical and non-disabled people certainly don't understand because when you blame your mom (in this case my biological mom) for literally being the reason why people treat you like a kid or why you're not allowed to have sex, people just thinks it's another case of "blaming something on someone else," or "pointing fingers," or "misdirected anger or blame." No, FASD, just like Shaken Baby Syndrome, are conditions that are literally caused by someone else's actions (choices that the other person didn't have to make) and conditions that could have been prevented by the person not making certain poor choices in the first place. So when a person with a condition that was caused by someone else is treated like a kid or not allowed to have sex or vote or whatever (even if accurate or justified and 90% of the time, I don't think it is but just unfair and unjustified infantilization), then the person is literally not able to do those things because of someone else making selfish or poor choices that the person didn't have to make and the person with the condition have every right to be mad at the other person and every right to blame the other person for literally causing them to be the way they are. People whose conditions were caused by other people's actions and choices are more likely to understand this and more likely to understand me.

​

And one last thing, people "call out" my behavior as "childish" or "immature" like when I talk about reverse psychology to get my mom to loosen up or doing stuff behind her back, but have you thought maybe my "childish" or "immature" behavior is literally the result of her treating me like a kid in the first place because if she treated me like the adult that I am, I wouldn't have to do anything behind her back and I wouldn't be thinking of ways to get her to loosen up. And no, sitting down and having a conversation with her like an adult doesn't work because 1) she doesn't see me as an adult and 2) she gets defensive quick. But I would love to have a supportive mom that I could talk to about my poetry that I share online and share with her the positive comments I get sometimes. And not have to worry about her taking, or trying to take, my phone from me just for doing something that other adults has the freedom to do.

Hello all! Here is a collection of FASD research that i've used to better understand this disorder. I made this like two years ago so the most recent article is from 2024 but I will add whatever new info I find! (sorry for everything being so text heavy!)

Websites:

• fasdunited.org
  • An advocacy resource about FASD for people with fasd, parents, caregivers, family, etc.
    
• https://www.cdc.gov/fasd/index.html
  • A general guide about FASD by the CDC.
• KnowFasd.ca
  • An interactive website about various FASD behaviors created by the Canada FASD Research Network. (Updated May 2023)
• "Me & My FASD" fasd.me
  • Resource website for children and young people with fasd ran by people with FASD.

Articles:

• "Fetal Alcohol Syndrome and Fetal Alcohol Spectrum Disorders"
  • Reviews physical and mental effects of FASD. (Pub 2017)
• "What Are Neurobehavioral Disorders?"
  • A basic look in what neurohavioral disorders are . (Updated Oct 2021)
• The Healthcare Professional's Core Resource on Alcohol Knowledge. Impacts. Strategies: Medical Complications: Common Alcohol-Related Concerns"
  • Reviews a list of medical conditions and complications associated with alcohol intake. Doesn't focus on FASD, but useful resource for potential relation.

Research Papers:

• "Neurobehavioral Disorder Associated With Prenatal Alcohol Exposure"
  • In depth review of neurobehavioral disorders associated with FASD. A bit outdated but still very useful. (Pub Oct 2016)
• "The Impact of Oxidative Stress on the Epigenetics of Fetal Alcohol Spectrum Disorders"
  • Explains the link of oxidative stress from alcohol intake on cellular function in FASD. (Pub 2023)
• "A Systematic Review of Interventions to Improve Mental Health and Substance Use Outcomes for Individuals with Prenatal Alcohol Exposure and Fetal Alcohol Spectrum Disorder"
  • A summary of research for mental health and substance use improvements for people with FASD. Focuses more on children than teens and adults. (Pub Nov 2020)
• "Visual and ocular findings in children with fetal alcohol spectrum disorders (FASD): validating the FASD Eye Code in a clinical setting"
  • Examines visual problems in people with FASD and how it can be potentially used to detect it. (Pub March 2023)
• "Eye Abnormalities in Children with Fetal Alcohol Spectrum Disorders: A Systematic Review" (Lost: if anyone can find a copy!)
  • Similar to above. (Pub Sep 2022)
• "Racial and ethnic disparities in psychological care for individuals with FASD: a dis/ability studies and critical race theory perspective toward improving prevention, assessment/diagnosis, and intervention"
  • The impact of race and ethnicity in care for people with FASD. (Pub March 2024)
• "Fetal alcohol spectrum disorder predisposes to metabolic abnormalities in adulthood"
  • A study done on zebrafish to find FASD link to metabolic disorders. (Pub March 2020)
• "Prenatal Alcohol Exposure and Metabolic Disorders in Pediatrics: The Role of the Oxidative Stress—A Review of the Literature"
  • Similar to above but updated. (Pub Feb 2024)
• "Increased incidence of renal and urinary tract anomalies among individuals with fetal alcohol spectrum disorders (FASD)" (Lost: if anyone can find a copy!)
  • Identification of renal and urinary disorders in FASD. (Oct 2023)
• "Autism Spectrum Disorder and Fetal Alcohol Spectrum Disorder: A Literature Review"
  • Summarizes readings and research about the possible relation between FASD and ASD. (Pub June 2022)

Books:

• "Fetal Alcohol Spectrum Disorders: A Multidisciplinary Approach" (Lost: if anyone can find a copy!)
  • A extremely detailed look into FASD including less researched info. (2023)

Videos:

• "Individuals with an FASD"
  • A playlist of videos about perspectives from people with FASD.

Good afternoon just looking for some advice.

My father in law passed away at the end of last year and we are in the process of becoming my partners 17 year old brothers legal guardian. His birth mother is an alcoholic and he has never been in her care we strongly believe that his mother would have drunk throughout pregnancy and believe he could have fetal alcohol syndrome that has never been diagnosed. I had also only met his brother on two occasions before his father’s death so I am only getting to know him now.

Some of the things we have noticed is that he struggles with simple instructions and struggles to complete simple tasks. Has not gained any GCSE’s at school and has struggled academically throughout life. We have caught him out lying quite a few times. His social skills are quite basic and he struggles to hold conversations. Physically his hands shake.

We are concerned that his dad hid this as he believed he was protecting him but we are now trying to get as much support in place as possible as it is now evident that he is going to struggle in life. We have lightly explored this with him and he said his dad told him that he does have it but the conversation didn’t go much further than that.

Do people think this sounds like it could be fasd? I understand that it is on a spectrum. He has told his councillor that he thinks he has ADHD but we don’t think it is this, his cousin (only friend) was diagnosed with this and he throughout life has shadowed all of his behaviour. We are currently waiting for a drs appointment but this is taking some time as we need to register to him at a new GP. We are in London UK.

Hi everyone,

FASD Assist is designed to support individuals with Fetal Alcohol Spectrum Disorder (FASD), caregivers, parents, and support workers by providing tools and resources that help manage day-to-day challenges, routines, and support needs.

After a lot of development, testing, and feedback, We have finally launched it on both Android and iOS:

📱 Android: https://play.google.com/store/apps/details?id=com.fasdassist

🍎 iPhone/iPad: https://apps.apple.com/in/app/fasd-assist/id6771342405

If you work with FASD, are a caregiver, parent, support worker, or have experience in this space, I’d love to hear your feedback. Suggestions, feature requests, bug reports, and honest opinions are all welcome.

Thank you for taking a look, and I hope the app can make a positive difference for someone who needs it.

So to preface, I was adopted when I was younger, but knew my mum and my siblings - my mum was a serious alcohol and drug addict (heroin and crack cocaine) - I have a brother who is highly suspected to have a more serious form of FASD, and a sister who is confirmed to have it and the most serious form - she has the facial features and also very low IQ and struggles with life I think she has a carer

I have been diagnosed several years ago with ADHD, I have incredibly poor spacial awareness and coordination, I am incredibly messy and disorganised, have lost most jobs due to lateness or other issues, I am incredibly impulsive and always have been, an addictive personality, I have very poor emotional regulation (I get worked up very easily, I can't stop thinking about things etc), I have injured myself many times by cooking etc and using scissors and knives (not intentionally).

I struggle with anxiety and depression also.

I have a slightly thin upper lip, and a less pronounced philtrum but wouldn't say you would notice it unless I pointed it out to you, I had a small hole in the walls of my heart growing up - was told the flap didn't fully close - unsure if that is related but apparently is quite common anyhow.

However I'd like to think I am quite bright, I still can live mostly a functional life aside from feeling overwhelmed a lot with responsibilities you have as you become an adult and alcohol usage as I am again incredibly impulsive and have an addictive personality.

I wanted to ask is this worth trying to speak to a GP about for a diagnosis/ what are the options if I am diagnosed/ will this mean my ADHD diagnosis is removed and I can't take medication, what do I need to ask my GP about in regards to this or info I need to mention.

\\\*To add on, it's confirmed that my mum drank while pregnant with all of us, and probably other drugs - she was physically dependant, however if I was to ask her I know she wouldn't admit to it, my biological dad wasn't around when she was pregnant with me, my other siblings also wouldn't back this claim up either I don't think, my nan who would have been able to confirm it passed away many years ago.

I do have my adoption reports/every document there is, and there are people like her brother who would probably be able to confirm it, and possibly two people who used to look after me quite a lot who were her boyfriends at the time I was with themselves daughters.

I also have my ADHD diagnosis, and probably have school reports etc, as well as times I've got myself in trouble generally in life.

Hello,

The Thrive FASD Lab at the University of Rochester is running a program that helps young adults with FASD work towards achieving their goals.

This is the perfect opportunity for young adults with FASD to improve their goal-setting skills. The program involves real support from the community to assist you through this journey.

You can participate if you:

- Have FASD

-Are 18-25 years old

- Live in the United States

Click the link below to take action toward your goals now!

Know someone who would be a great fit? Share this post!

https://studypages.com/s/thrive-study-helping-young-adults-with-fasd-reach-their-goals-608917/

Hi! I’m wondering if anyone has thoughts, strategies, ideas for how to support individuals seeking answers about possible FASD when there are no providers in the area (3+ hour radius and a year long waitlist) who can recognize the possible signs, let alone diagnose. I know there is no magic solution, but would love to hear if anyone has lived this or has ever thought “why can’t the [provider, agency, etc] do _________”.

For example, we have very few psychiatric prescribers in our area, and even fewer who work with youth. One agency developed a partnership with a provider in another area who fast-tracked referrals coming from that agency.

No bad ideas!

Hi, I am no longer in contact with my biological mother, she is very sensitive about this topic and also vindictive after my autism dx because she doesn’t want to believe I have issues from her drinking. I am certain if someone tried to get her statement she would not respond at this point because of the anger she has for her family. She along with others have admitted to me that she binge drank during her pregnancy. I have a screenshot text from her saying she drank as well as a letter from my grandmother and my father’s statement that she was a bartender and they drank together often as well, though he did not know she was pregnant. I do not have many facial features of the disorder minus a thin upper lip but this could be genetics. Do you think this is enough information for a formal dx as an adult? Where would you go for one?

FASDers with TMJ disorder, parents/carers of those and are thinking about braces for their children, anyone who struggles with teeth brushing or wants adult braces, please inform yourself with this.

TMJ disorder manifests in so many ways you may think are unrelated but are strongly linked, such as; insomnia/sleep apnea, cervical spine dysfunction, chronic sinus problems, tinnitus ❗, migraines, depression, and a lot more. I can’t stress enough how important your jaw and oral hygiene are to the rest of your body and quality of life.

Children, even more so those that are special needs, are infamously bad at brushing their teeth. But with FASD an established dental care routine is so incredibly important! I’m 16, not a professional, but after finding out I had suspected FASD and arthritis in my jaw, it sparked an interest in orthodontics. TMJ disorder is prevalent in this syndrome as a symptom of both jaws, most importantly the upper one, being deficient. Also causing crooked teeth. PLEASE for the love of god if you are thinking about getting you or your FASD kid braces, DON’T… yet. Extraction of the premolars is a very common practice in orthodontics and will CREATE OR WORSEN A TMJ DISORDER!!! Taking out teeth add to underlying skeletal discrepancies, which are a diagnostic feature in FASD patients! Likewise, degeneration of even a single tooth (which can be invisible at first if it’s asymptomatic in the root), may unravel a hell of symptoms. The jaw needs the roots of teeth to keep it’s structure. Please adults and carers, brush properly, FLOSS, and get check ups if you can afford them.

Our skeletal jaw discrepancies develop misaligned bites, crooked teeth and teeth in awkward places even if it doesn’t seem as though. Having these issues makes you prone to tooth decay, emphasising the importance of dental hygiene for us.

If you are thinking about getting you or your child braces, it is crucial to make sure you are offered The Damon System (favourably) or traditional braces without extraction. Please take this from me who had to spend £8000+ on treatment, 2 surgeons and 2 orthos to figure out what was wrong. Please try go to a TMJ or jaw specialist orthodontist, and clinics that do early intervention and growth modification.

More importantly for adults, go to your dentist and ask for a bruxism night guard (NHS 18+ around £70-£300), even if you don’t think you grind your teeth. If they find evidence that you do, they will sort you one. I advise anyone with bruxism who can’t afford an official mouthguard to order a cheaper alternative online.

I hope people signify this information, preventative action is valuable. Especially early intervention, as young as 6 years old, take your kid to a specialist orthodontist. It could cost them a chronic condition.

I was diagnosed with FASD as a baby, but I feel like most of what I see online is about kids. I don’t really see a lot from adults talking about what it actually looks like long term.
I’m doing “fine” on paper. I have a job, a house, a fiancé, responsibilities, all that. But the way I function feels… different. And honestly harder than it looks from the outside. I feel so damn alone in this.

Hello good people!

I’ve been going down this rabbit hole learning about FAS which was prompted because of a new relationship I’m just starting with a really lovely man, who I always noticed was a little different (part of the reason I love him, but I do see a lot of challenges).

His backstory is he grew up in an eastern European orphanage until the age of 6 where he was adopted by an American family and grew up in the states. He talks a lot about his life, but it was only recently he mentioned that his dad is pretty convinced him and his sister have FAS. His dad apparently met his bio mom and she was a severe alcoholic. His adopted dad is a therapist and so he strongly believe my boyfriend has FAS.

When he went more in depth about his diagnosis the other day I started asking him questions such as what does this mean for him developmentally and he started to describe ways in which he is “wired differently” like lack of impulse control. Of course I’ve noticed differences in his behavior, but I always chalked it up to growing up in an institute where he wasn’t even touched as a baby. But once I started reading about FAS, everything clicked.

There are some things I find particularly problematic like his very quick temper, lack of impulse control and compulsive behaviors, complete lack of organizational skills, memory issues and although we can do fun things on a spontaneous level, planning things ahead is challenging. Hes also a little…odd. Again, I love him for being quirky and different, but he sometimes rubs up against other people the wrong way and even with me he doesn’t understand certain social things that most other people seem to get no problem. Like, he pushed past personal boundaries without realizing that might make another person uncomfortable. He’ll do things like squeal directly in my ear because he thinks it’s cute and funny, but it will really bug me and I need to get away. He’ll also barge into the bathroom without knocking, that type of thing. If I mention how these things bother me, he gets cranky and depressed, blows up on me, but then comes back really remorseful. Although these social issues have led to marred relationships, many lost jobs and even some trouble with the law. Out of all things, it’s this lack of understanding that even though he doesn’t think what he is doing is a big deal, others really do. His whole thought process is “it’s not a big deal to me so it shouldn’t be to you.”

I’m trying to envision a future for us that works. If you have any advice to give me on how to be more productive, compassionate and understanding without my compromising my own sense of self, please do share. I’ve dealt with a lot of different personalities while dating. He might be different, but he is not malicious or ill intended. He’s just, for lack of a better word, different.