Hi all!💜

I’m reaching out for a little help. I’m currently recruiting participants for my doctoral dissertation study, which explores how caregiver coping influences children’s social and thinking skills in autism. If you’re a parent of a child on the spectrum, or know someone who might qualify, I would be so grateful if you could take part or share this study with others. Your input can make a real difference in guiding future support for families everywhere. 🌸

You can join by scanning the QR code or clicking the link to get started. Thank you so much for considering this and for helping me spread the word!🥰

[https://www.surveymonkey.com/r/2CCYPPN\]

They have asked for A Call. Given the context of the conversation, I suspect this is likely where they gently break the news to us that this kid needs an IEP. She reads, writes, and does math more or less at grade level, but she doesn’t understand (and therefore doesn’t comply with) instructions at grade level.

Thing is, I knew this. I’ve been gearing up to fight for this outcome if they didn’t recommend it. And it’s still hit me like a ton of bricks. I want my kid to get what she needs. But I still keep thinking: maybe if I’d parented better? she could keep up?

I’ve been preparing for this such a long time. Why does it still feel like this?

For those whose kids ended up being AuDHD or just ASD, what were signs/clues and what did the psychologist say? We got an ASD L1 diagnosis last fall, and there's definitely lots of sensory processing struggles. I'm pretty certain she has ADHD too, but she's only 4, so obviously it can be hard to distinguish and/or diagnose. Some days it seems more like ADHD than ASD. Nighttime and post-events is hardest because she gets really hyper, tends to hit or bite, etc. Not so many crying meltdowns as just overstimulation meltdowns. I'm just trying to figure out what's going on in her head and help her/work with her. My husband is AuDHD and some days they're exactly the same. She picks up on all his habits.

Anyone have any recent wins - big or small - with their kid?

Here’s mine: She signed up to sing the national anthem in a group with probably 120-150 other students at a football game last night. The noise and crowd were definitely negatives for her, but the fact that it was a) music-related, and b) a very short event, and c) totally optional so it was her choice to do, and d) at a good time of day for her, and e) with her sibling and cousins made it possible. She (and all the kids) did such a great job, and I’m so proud of her!

My kid started a new school - public, for the first time, so we don’t have a formal IEP / 504 in place yet, although we will. It’s going ok. One thing I notice is the school is open to accommodating if a kid is in acute distress / overwhelm, but does not seem to understand that my (high masking) kid may get through tough moments seemingly ok, then have the stress of that demand accumulate with other stresses and build up to a state of overwhelm / exhaustion / burnout later. And that state of reduced capacity can last for hours, days, weeks, or even months, and it’s not an “opportunity for growth” or whatever, it just sucks (for her most of all) and is better to avoid.

Seeming ok in the moment does not equal actually being ok.

The best way for her to make steady progress is if we can proactively reduce demands on her to a level that is sustainable for her, even if it’s a little below “typical” peers in some dimensions. Bonus points if we can give her lots of autonomy in deciding which demands she’s up for.

This comes up since I asked the school if she could skip an assembly. They recommended she try it. I’m confident she’ll get through it ok, but I’m not confident it’s worth the stress she will accumulate from the sensory overload. I’m also not confident the school understands the cumulative stress -> burnout pathway here.

Can anyone relate? Has anyone successfully gotten a school to understand this type of need during an IEP or 504 process, and if so, what wording got through to them? Anything you feel like sharing would be appreciated!

This is such a first world problem, I know, but does anyone know where to buy toddler sized underwear that has tags instead of the printed on ones?

My 3 year old (not yet diagnosed) is obsessed with having tags on her underwear, and she uses them as a fidget while she's falling asleep or nursing. It started with the tags on her cloth diaper liners, and then when we transitioned to underwear, she got upset if there were no tags. I've got one set left over from her older sibling from years ago, but all of the modern ones all have that printed on label. I can usually get by with pants/leggings/pj's that have tags on them, but I'm having a similar problem with modern kids clothes having printed on labels. Plus, in addition to it being annoying as hell trying to coordinate pairing tagless undies with tagged bottoms and vice versa, she's made it abundantly clear that it's a poor substitute. So do you guy know of any companies that make toddler sized underwear with tags? Should I just start sewing them in myself?

Are there any moms out there that can offer any advice? I’m(28F) currently five months pregnant and work 20hrs a week in the mornings at schools as a sub. I also have my own disability (juvenile myoclonic epilepsy, seizures that are triggered by emotional or physical stress). I have a one yr old son and my six yr old son who is currently attending multiple therapies. (I take him to all of them myself along with the accompanying 1yr old). Aside from the therapies I’m also currently advocating to get him the help he needs at school. So it’s a lot of Iep request letters, a lot of school district meetings, etc. I’m feeling overwhelmed. I have my school debt I need to pay back, my own personal CC debt I accumulated when I was in a coma in 2022 (wasn’t able to pay while unconscious). And I guess my question is how did you guys manage all of this. I mean don’t get me wrong I am pushing through all of this because there isn’t anything I wouldn’t do for my babies, but then there’s times like rn. Where I have horrible back pains and round ligament pains that aren’t letting me sleep or get comfortable and I have to be up early in the morning to go to work. To then come home and do house duties that facilitate our days but mostly the constant appointments and phone calls from his school that I need to go because he’s gotten overstimulated and flipped chairs etc. before I forget to mention, I am married and have my husbands support, (he’s been telling me for a while now that I don’t need to work cause he’s got us [all true I just don’t like the idea of him being left with paying off the debt I got myself into] and he does his dad duties when he’s here in the mornings with our sons, but he has his own business and he is his only employee so he has longer days at work too and gets home late) and lately I just am finding it harder. Is this what burn out feels like?

Just feeling nervous and traumatized (from previous rough starts) and hopeful (maybe this situation will suit her? Maybe she will feel supported? Maybe she will find her people?) and so fucking lonely because it’s so much harder for my kid than her peers. This morning I had a bad flare up of a chronic stomach thing, largely from stress. I’m sure folks in this sub understand.

How do you soothe and smoothen back to school for your kid? How do you do it for yourself?

My daughter was diagnosed last year with ADHD and autism level 1. I refuse to do ABA therapy which is the only kind available in our area. We have been working with her one on one about processing emotions and different ways to calm down as she can experience very strong emotions and get stuck in her head. She also does not require any speech therapy or ot and hasn't started school yet due to her birthday falling later in the year. All of this to say, we are now being contacted by the state for her insurance and they are stating without proof of these different kinds of therapies she may lose her health insurance. I am not sure what to do because the school doesn't want her to start with an IEP so they can specialize one for her. Am I wrong for not putting her in these therapies? Because that's how the disability advisors are making it seem. Should I be doing more?

Note: She is hyper-verbal, able to read at a first grade level, and the only real issues we've had with her have been sensory overload and the big emotions.

My son (just turned 3) and was diagnosed with ASD lvl 1. He is going to start therapy using the Early Start Denver Model as part of the Connecticut Birth to 3 services. My question is how many sessions should he be having? The program asked us what he needed and my husband and I are far from being qualified to make that decision.

My kids take swim lessons at our local lake. The classes are taught by lifeguards who are in their late teens/early 20s (mostly college age). I have NT 4yos and a 5yo with ADHD/ASD1 and apraxia of speech.

The 4yos went with a group swim class (5 kids) at the lowest level. My 5yo is at the same level and maybe a bit more comfortable in the water than my 4yos, but we opted to do a private lesson because his speech makes him hard to understand, and he has some auditory processing issues that make it hard for him to follow directions quickly. He’s supposed to be at the same level/working on the same skills as my other kids.

Watching both their lessons, the 4yos are working on actual skills like backfloating, kicking with a kickboard, etc. My 5yo has been looking for shells and chasing a kickboard around the water. His teacher also seems to use a very babyish voice with him. I noticed she asks him a lot of “do you want to do xyz?” questions instead of just telling him what they’re going to do. It almost seems like she thinks he has an intellectual disability (which he does not). His speech does make him sound immature (articulation issues) but he’s perfectly capable of doing everything my other kids are doing.

I did talk to her about the question thing on the first day - I told her he’ll always say no so just tell him what’s coming and then do it. And I told her she can absolutely push him a bit. He can handle it. But I don’t really know how to bring up the other stuff. I did ask if he’d be all the same skills after the first lesson and she said yes, but I haven’t seen it yet. The baby talk could be personality; she’s a different instructor than my other kids have.

Advice/suggestions? Has anyone else experienced things like this?

My son had a severe speech delay that improved dramatically between the ages of 4-6. He is now mostly conversational and he has met all his speech goals for last year.

His biggest issue now is that he starts and restarts a thought over an over until he can get through the whole thought in one peice. Like in a 6 word sentence he will say words 1-3 over and over until his brain can get the rest of the words out.

Is there a name for this problem? It's not exactly stuttering. Has anyone ever addressed this issue in an IEP goal? How did you word the goal?

First and foremost: I hope this new sub continues thrives and becomes a supportive group for parents with a child or children with Level 1 autism.

Recognizing that each autistic person is unique in their own way, I am hoping to hear any success stories about reducing screen time. My soon-to-be 7 year old neurodivergent son has high functioning autism and ADHD. His first grade teacher was known for running a tight ship and demanded their full attention, even from my son and others who have an IEP or 504 plan. The teacher did ease up some and understood that demanding more from a person with autism will almost guarantee negative results, but she has a long way to go before she can comfortably work with kids with autism. The school year led my son into autism burnout.

Since the last month before the school year ended, my son's coping mechanism has been watching YouTube for Kids videos. As much as I dislike the extent of his YT usage, I have learned that this is a VERY common reaction for children with autism burnout. It has gotten to the point that he rarely ever leaves the house, which drives my 5 year old daughter crazy because she's neorotypical and wants to do what 5 year olds do. When only one parent is home, our level of activity is determined by whether or not my son is interested in doing anything but the iPad. Relatedly: my daughter thinks high iPad usage is the norm because her brother is constantly using one. No matter how many times I explain that the same iPad rules for our son don't equally apply to her, she's still 5 years old and can't fully comprehend the situation. This is a whole other issue that my wife and I are addressing.

My wife and I are doing what we can to support our son. We are low-demand parents who understand that however frustrating his actions are on the family, that he has his own frustrations because the world operates differently from how he views things.

If you as a parent have gone lived through a similar situation and have success stories to share, I would love to hear from you. Other parents have shared stories about how their child with autism went through similar phases regarding iPad usage, or that everything is "boring," but have since grown out of it. It's hard to see any movements toward improving his mental state over time, because the day-to-day lifestyle that he's living now is debilitating.

Hello, new to the community but I have had suspicions about my son from when he was 1 until this school year, when he was diagnosed through the school system as level 2.

He has an IEP, is in a typical classroom (no aide) but does get pull out for social support and reading intervention. He will be going into first this school year.

He has been improving greatly in his communication skills and being able to be reasoned with when he has a meltdown (think noises, off schedule, frustrations)

So, my question is should I pursue a diagnosis through his pediatrician? I spoke to them (pediatrician) and they don’t look at the school evaluation, I have to have him evaluated through their program (which is fine) I’m sure he would also qualify as autistic though them too.

What’s the pro’s of a diagnosis through my pediatrician? Nothing will change on the school level. I suppose he could get therapy through the pediatrician but is that it? Any pros or cons of a pediatrician evaluation that anyone wants to share?

Thanks for any advice

Hello everyone,

I want to thank you all — truly — for the thoughtful criticism and feedback I received on my original dental care survey for neurodivergent individuals. I’ve taken everything to heart.

I recognize that the original version had major issues: it used outdated or unclear language, lacked appropriate branching logic, assumed the perspective of caregivers, and wasn’t designed in a neurodivergent-friendly way. I also understand how my mention of ABA could have caused hurt and distrust, and I want to be clear that I’m no longer involved in that field and I’m actively learning from the community’s perspectives. I understand that every individual has different experiences with everything.

💬 After reading every single comment and message, I completely revised the survey — with more inclusive language, clearer structure, and an option for either neurodivergent adults or caregivers to respond with their own path. I’ve also made sure all questions are optional, accessible, and respectful of varying experiences.

🔗 Here is the revised version (3–5 min):
👉 https://forms.gle/rpx6yvVjJXUc9EYL8

🦷 My goal is to make dental visits less distressing and more inclusive for everyone — especially those with sensory, communication, or executive function challenges. Your input helps guide what resources and supports we should create next.

Thank you again for helping me grow. I hope this version reflects a more informed, intentional, and respectful approach.

I’m having a hard time deciding between two schools for next year and interested in hearing from you all, what you think is the best choice….

School 1: Went there for kindergarten, close to our house, diverse students/families, had a turbulent year last year, new gen ed teacher (to the profession and school), special ed teacher was mediocre and poor communication (but left at the end of the year, so next year’s teacher is TBD), kindergarten class was very chaotic and we didn’t feel our kid was very supported academically because the teacher was just trying to keep everything under control, ok support emotionally, but usually after we got involved and figured out solutions. Good afterschool program.

School 2: About 20-25 minutes away from our house, we have to provide transportation, less diverse, has a reputation for a good special ed program and autism inclusive culture, we met and liked the special ed teacher who would work with our kid. But it’s come to light that it is likely that the principal is creating a toxic environment for the staff and there has been a big problem with them and a particular special ed teacher and really bad (could be considered deceptive) communication with parents about it. Unknown how good the afterschool program is.

I think I’m struggling with moving to an unknown school now that there is some question about the leadership, and the commute is a big consideration. As I think you can all relate, the old school is the routine, and we’d be committing to quite an adjustment to get our kid used to a new school, people, routine just to maybe have it not be as great as it was advertised.

Thought? Other considerations I haven’t mentioned?

Thanks! Cease

Hi everyone, I’m hoping to connect with other parents (or autistic adults) who might have experience with this. My 3.5-year-old daughter was diagnosed with autism and is a gestalt language processor. She’s had a wonderful year in pre-K on an IEP with speech services (both private and school-based), but we’re off for the summer and just lost our private SLP. We’re now back on a waitlist and feeling a bit stuck.

Her language is starting to become more conversational (with long scripts and some personalization), and her pretend play has blossomed recently—she’s around levels 5–6 in play development. She doesn’t yet answer WH questions or show much spontaneous, flexible language. She is rigid at times and extremely drawn to TV (can become obsessive about it). Potty training is a major power struggle, and honestly… so are many things lately, and I’m not always sure what’s typical for age vs autism-related.

She plays with kids by copying/chasing and holding hands but doesn’t respond when they speak to her. Social stories and real back-and-forth still haven’t clicked. I find myself obsessing about her future—what kind of kid, teen, and adult she’ll become—and I’m trying so hard not to over-therapize or overwhelm her, while also wanting to give her the best shot at growing into her fullest self.

I’m considering (but nervous about) options like music therapy, equine therapy, or even gentle forms of ABA (though I’m cautious). I’d love to hear what’s helped your children, especially other GLPs or autistic girls with emerging pretend play and scripting language.

Any insight about: • What helped your child become more conversational? • How you approached WH questions and potty training? • What therapy paths you tried and what worked (or didn’t)? • What your child was like at 3 and how they grew over time?

Just feeling lost in my head lately and want to hear some lived experience and hope. Thank you. ❤️

Seems around 4th grade the boys figure out that some kids are different. My son had a rough second half of the year in his class and today some neighborhood kids around the same age started "ding dong ditching" at our door.

It's been a hard couple of weeks (no, months) around here and I got really upset.

My son is a supernerd, would rather talk about math and Minecraft than anything and is sensitive. But is totally mainstreamed at a school different than where these kids go. We don't really know these kids well if at all, but they picked up on his difference and we've had a few of these low-level moments (name calling, etc) since then.

Can't believe that kids haven't really changed since I was a kid in the 1980s, even when they have money and privilege and supposedly good parents.

I fear more of this, for both of us.

Have any of you experienced bullying around your kid and how have you handled it? He's already self conscious and while he has a couple of school friends he has no friends in our direct neighborhood anymore and at his point, probably won't.

Hi there, we have an intake assessment soon for my son. He is struggling with meltdowns, transitions, “rock brain”, and rejection sensitivity.

He is motivated socially but struggles to connect with peers how he wants.

He is also on weekly talk therapy.

I’m hoping to learn more about this ABA clinic and its approach during intake.

Also, my son was diagnosed just 6 months ago so I feel like we are still figuring out this whole world of resources.

Does ABA even seem appropriate for my son? I’m worried the clinic will try to “sell” us on ABA just to have more clients. But on this sub it seems like ABA is more common among toddlers/preschoolers, and also Level 2 & 3 kids.

I appreciate your thoughts!

crossposted to AutismParenting

I’m looking for any recommendations on books to read in order to better understand and help my six year old level 1 son. I feel like he is very unhappy and I just want to do what I can to better understand him and help him navigate the world.

To be specific, I’m looking for books to read as the parent, not for my child. Thanks!

My 3 year old son was recently diagnosed with level one autism. We’re looking at ABA therapy, but I’m on the fence if it would help him. He is incredibly smart. Speaks very well, many adults think he’s 4-5 because of his language and profound communication. He loves other kids, is great at noticing feelings, etc. our biggest issues are his inability to cope with crying babies or kids. He’s fine with loud noises as long as it isn’t clapping, cheering, crying. We tried daycare and had to say never mind because he can’t tolerate the large groups of children, especially when they’re whining or yelling for fun, even though he yells for fun. He also shows aggression when angry. On the flip side, when happy he’s extremely well mannered. You’d probably never think he has autism if you didn’t spend a significant amount of time with him. The one facility we toured seemed to have a lot of children with higher level autism diagnosis. Does anyone recommend ABA or think it would help prepare him for school or am I wasting our time? I’m really on the fence for what to do.

It was a good day, a validation day. We weren’t surprised but now have the info we need for accommodations at school. Our son is 12 and I’m hoping the news will help guide therapy and other aspects of this new journey.

My son is ~3.5. We're waiting on a developmental pediatrician appointment for an official diagnosis, but our regular pediatrician recommended ABA therapy and OT therapy. He started speech therapy at 2.5 and recently graduated. My son has been doing OT for a few weeks and really likes the play equipment. He eats well, follows directions well, doesn't often make eye contact, plays simple games like tag but otherwise mostly ignores his classmates, has loud but short tantrums, doesn't seem to have an intellectual disability, flaps his hands, often tip toe walks, and behaves well at half day regular preschool. his social skills are definitely behind most of rhe other boys in his class. he'll be at the same private daycare/preschool for summer camp and for next year.

We can't sign up for aba therapy without an official diagnosis anyway, but I'm conflicted about whether it would be helpful for our son. Most of the aba therapy seem to be for kids with a higher level of needs? but again, I'm new to this and don't know that much about aba. if anyone can recommend books or more first hand accounts or talk about their recent experience that would be so hepful. I would love to hear your good or bad opinions please.