Hi everyone,

I’m reaching out because I grew up seeing my family struggle with a specific part of my younger autistic brother’s care, and I want to know if others experience the same frustration.

Whenever we had periodic check-ins with his doctors, it felt nearly impossible to accurately remember and summarize months of subtle day-to-day changes in just 15 minutes. Small shifts in sleep, sensory needs, or stress levels often got missed or forgotten, and we constantly felt this pressure to only report "major crises" to get his support plan adjusted.

Because of this "reporting gap," I am doing some preliminary research to see if this is a shared challenge across the community. I want to understand if caregivers and autistic adults find it difficult to communicate these longitudinal changes without objective daily data.

I put together a short, completely anonymous survey (no emails collected) to validate if this problem is as widespread as I suspect. It takes about 3–5 minutes.

Link to the survey: Survey

Your honest experiences will help determine if there is a real need for better ways to track and communicate daily realities to clinicians.

Thank you so much for your time and any feedback you have in the comments!

My 5th grader has trouble making friends with kids her own age because her emotional and social skills are not the same as that of a regular 5th grader. She has an easier time making friends with younger kids. How do I have the conversation that she needs to make friends with children her own age or is this something you worry about?

Has anyone ever had a misdiagnosis of autism for their child? I sometimes wonder if my child may be on the spectrum or if it’s just some level of immaturity for him? He has had a couple of evaluations when he was younger that said he was not on the spectrum but did have one where they thought they saw high spectrum traits. I’m just wondering if anything has had any similar experiences. thank you for sharing and letting me share

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Mi hijo presenta características del espectro autista.

Sin embargo, hay algo que me preocupa mucho y que siento que no hemos abordado suficientemente con los especialistas: desde pequeño evita muchísimas experiencias nuevas.

Le da miedo caminar fuera de nuestra privada, subirse a un avión, manejar go-karts, utilizar herramientas e incluso agarrar un cuchillo. Generalmente no dice «tengo miedo», simplemente responde «no quiero».

Lleva aproximadamente un año sin asistir a la escuela y su mundo se ha ido limitando mucho.

Lo curioso es que recientemente expresó por iniciativa propia que está aburrido y quiere hacer cosas diferentes.

Quisiera saber si alguien ha vivido algo similar, qué tipo de especialista le ayudó y si encontraron alguna terapia efectiva para trabajar estos miedos.

No busco un diagnóstico por internet, sino experiencias y orientación para encontrar al profesional adecuado.

Hello Parents,

We are developing a new neurotechnology wearable device for parents of children with autism.
The product is a digital health platform that informs families, caregivers, and clinics about neurodivergent children by detecting states ranging from anxiety to meltdowns and supporting emotional regulation and proactive care.

We would love to connect with parents to get feedback on product design features.

#autism #neurotech #weaarable

Thanks,
Imtiyaz

What was your child’s development like as a toddler?

My son had a regression at 18 months and lost all of his words, gestures and eye contact by 2. He’s now 3 and non-conversational (gestalt language processor and hyperlexic). I sometimes suspect ID, but won’t be able to test until he’s older.

What were the signs that pointed to ID? Did they eventually take an IQ test?

i have 8 year old nephew i am very very close to. i dont know how to exactly explain this situation so please bear with me i just really need advice because i am worried. he is a sweet boy but he really doesn’t care about anyone but himself. He loves everyone he really does but he is quite selfish. Recently hes been showing some concerning behavior. At his mom’s house he will pee in his room a lot and have tons of attitude with his mother and be really bad at school by spitting cussing putting up the middle finger touching girls butts. he jsut recently took a rock and smashed the neighbors car windows and scratched their car. and he really doesn’t care like when you say something to him he will just smile and laugh or hold back a laugh no sympathy whatsoever. He has sense he knows better he’s not dumb. Idk what level of autistic he is but he’s not like super autistic but at the same time you can tell he has autism if that helps explain anything. he’s always been bad but never like this where he really shows no caring in his body like don’t get me wrong he’s very lovable and sweet at times and he acts diffrent at every place he goes. He behaves and acts normal with his dad. at mine and my parents house he’s sweet he doesn’t act up BUT he has random moments for like half an hour he will just freak out and scream and he used to hit me and my parents but he stopped doing that and it’s just the yelling but then he calms down and feels bad about it. At home it used to just be him and his mom but now he has two little sisters and a step dad but he is very loved and his step dad loves him very much he isn’t treated diffrent he used to be fine with them but lately he just doesn’t care. Idk how to explain so please feel free to ask questions it’s just my nephew never acted like this before. last night i went to my sisters and talked to him a lone and he really jsut laughed in my face and didn’t care at all i even told him like how i was so proud of him for doing good in school last week makes me and grandma and grandpa so upset that did that to the neighbors care knowing mommy doesn’t have money right now and still don’t care (btw he loves being at our house a lot and loves me and my parents a lot cus honestly we kinda baby him which we know is also a reason why he feels he can but out like he does but he always has some kinda sympathy) . whevee it’s just me and him he don’t do not stupidness like laughing or arguing when he’s in trouble but he really just didn’t care yesterday and this behavior has been going on for awhile. also his dad isn’t but best thags a whole diffrent story with my mh sister but he love his dad and behaves with him but he’s also only with him every other weekend. but i understand hes has alot of change in his life the last two years but idk please feel free to ask questions bc ik i didn’t do the best wirhcexplaining.

My son is 4 years old and autistic, and getting his hair cut has become such a difficult experience for us. I’m honestly at the point where I don’t know what to do anymore, so I’m hoping to hear from other parents who have experienced this.
Every time we try to take him to the barber, he has a really hard time. My husband gets overwhelmed by the situation and embarrassed, and we end up leaving the barbershop without getting his hair cut. I understand that it can be stressful, but I really want us to find a solution that works for our son.
Today, I decided to try handling it myself. The moment I turned the clippers on, my son started panicking. That made me wonder if it’s the sound of the clippers that bothers him, or if it’s a combination of sensory sensitivities. I’m not entirely sure what exactly is triggering him.
The thing is, he really needs a haircut, and I don’t want to keep putting him through an experience that clearly upsets him. At the same time, I don’t want to resort to cutting his hair at home if we can find another solution that works for him.
For parents of autistic children who have struggled with haircuts:
Did you find that the sound or vibration of the clippers was the main issue?
What helped your child become more comfortable with haircuts?
Have quieter clippers, scissors, sensory-friendly barbers, or gradual exposure made a difference?
Did you work with your child’s OT or ABA therapist on this?
I feel stuck because I want him to be comfortable, but he also needs his hair cut. I’d really appreciate hearing what has worked for your children, especially if you went through a similar stage.
Thank you! ❤️

For the past few weeks anytime my son is eating more than he actually *chooses to* he starts chewing it up and gagging even vomiting at the table.

I would get it if it was new foods that I was trying to force him to eat that he simply didn't like, but these are foods that are tried and true for him. Mostly bread but he did it to cheese too.

He has ADHD and is still in the process of diagnosis for autism (although we're pretty sure) and always has needed to be reminded to sit and eat rather than go off and do something new.

Anytime he goes off and then is asked to come back to eat he will do this often ruining the rest of his food on the plate.

In a restaurant he simply got distracted by the crayons and was redirected back to eating and it happened there too (which was lovely).

I'm not sure if it's on purpose or what.

I don't know what to do I can't just allow him not to eat anything because he will not eat more than a couple bites of some probably unhealthy parts of his food if I do.

Does anyone have any recommendations for high chairs for older kids? He has outgrown his toddler high chair but very much still depends on it to keep him in one place at a time. I hope there are some of you out there in the same position.

someone please tell me what they think, ik you can’t diagnose her.. but please just give me your thoughts. & i know they say not to compare babies but it’s hard when all you see online is “if your baby isn’t doing this they are autistic” 😩

my 13 month old

- crawls

- pulls to stand

- cruises furniture

- is super clingy to me, she will play with other family members but once she spots me she’s instantly on her way to me lol

- gives high 5’s , kisses, sometimes waves

-she loves her own version of peek a boo .. but it’s her turning her head one way & then whipping it towards me and she wants me to say boo

- she loves jumping / bouncing

- she has a good pincher grasp & feeds herself

- she does not point yet

- she likes flipping through books

-she SOMETIMES looks where i point

- she gets excited when she sees her big brother

-she can say mama & dada purposely. she can say bubu ( brother ) but doesn’t say it to him. she babbles all types of other things like nanana, yayayay, etc

- she likes to hold my hands and if i say up she’ll lift my hands up and if i say down she’ll go down.. same with “open and shut” but she won’t do this with her own hands

- she plays with toys and sometimes looks at me while she does but a lot of the time she’s fine with just playing with the toy alone..

- honestly most of the time her focus is standing & cruising furniture.

- she eats any and everything, not picky at all.

- she understands no & come here.

- she smiles back at me, but doesn’t copy other faces really.

- if i clap she’ll try to clap sometimes

- eye contact is good 75% of the time but she does get distracted sometimes

- she stick her tongue out constantly & likes to lick stuff

mi hijo tiene 3 añitos y autismo.

Llego un dia de la escuela llorando, el es no verbal así que para mi es difícil aveces entender que pasa, vi que me mostraba con sus manitos que le molestaba la ropa, asi que le retire la ropa y se quedo en pañal. desde ese dia a sido un problema el ponerle ropa, llora muerde la camisa y cada vez que lo voy a vestir el llora no quiere usar ropa nose que pasa nose si es algo propio del autismo nose si puede ser algo más si alguien a tenido una experiencia similar y me puede aconsejar lo agradecería mucho.

At 27, Dimity's son Stu moved into his own home.

Stu, who is autistic and requires substantial levels of support, has been living in the purpose-built house with 24/7 care for almost two years.

The transition has been an opportunity for independence that Stu craved, and a shift in responsibilities for mum Dimity.

But like for many carers, there is an invisible caring load that remains.

Dimity still recruits and trains support workers, meets regularly with a team leader, oversees Stu's support program, advocates for him and acts as his nominee.

"It's the hardest thing to do, to share that load. Even with other people in your family," 67-year-old Dimity says.

"To trust another person to take on that responsibility."

But Dimity is learning to share Stu's care with others.

Buenos días. Alguien conoce o tiene referencia sobre el programa MAPA del Dr. Abraham B. Arenas, para familias con hijos TEA?.

Bonjour 😊

Je cherche des recommandations de parents concernant de bonnes écoles primaires à Québec qui ont des classes adaptées/spécialisées pour les élèves TSA.
Je cherche également une bonne école secondaire privée à Québec avec des classes ou un encadrement adapté pour les élèves TSA.
Si votre enfant fréquente ou a fréquenté une de ces écoles, j’aimerais beaucoup connaître votre expérience et vos recommandations.
Merci beaucoup! 🙏

Do any other families have a similar situation to mine. It’s been 1 year since my son dropped all his safe foods which included, eggs, pizza, chicken nuggets, French fries, ice cream and goldfish. The only thing that he has been taking is Pediasure which is prescribed by his pediatrician 4 times daily. He is turning 5 next month and I’m beginning to feel hopeless. I tried re-introducing his old safe foods and new foods and he is so grossed out by food in general. We tried feeding therapy but the closest one to us is two hours away so it is very difficult to take him on a weekly basis. Any advice is so much appreciated!!!

I was struggling with a place to ask for advice as this is new to me. My 3.5 year old started pre school 4 weeks ago and her teacher had noted a few things to me that concerned me:

She noted how she can read not memorize words but read full sentences in books she’s never read. My husband and I noticed this about 6 months ago but we always thought she was very advanced but her teacher had asked if we mentioned it to her pediatrician but didn’t provide more context as to why. She doesn’t obsess over it and at home plays like any 3 year old would but if she sees a sign or we read a book she leads the charge and reads it instead of us reading to her

She then mentioned that she is struggling a bit to make connections which shocked me because we have frequent play dates with friends and she’s never struggled. She was also at a babysitter for 2 years before this with 5 other kids and they have always played and interacted very well and never struggled!

Everything I am googling is saying I should have her evaluated for potentially being on the autism spectrum.

This has not been something I have ever thought of or been concerned about so it’s a little shocking to me that she had insinuated this.

Any thoughts? It seems like 4 weeks is a short time to assume something is wrong.

Also to note this is a private preschool so many of these kids have been together for a quite a few years so my daughter is a bit new compared to the other kids.

Any thoughts or insights would be helpful. I plan to talk to her pediatrician but looking for insight if anyone’s been in a similar situation and what steps you took

My son is 6.5 years old. He is Au dhd and has an IEP. He's in first and he's been having a good school year. His teacher and him have really gotten into a groove this year. And he's had minimal aggressive incidents after the first two week adjustment period.

However there is a horrible flu and his teacher among many others are out. He had a sub last Thurs and Fri and will have a sub all this week. Every day he has a sub there are aggressive incidents. He's hit other students and teachers. Today he has to miss reccess and I received a call from the principal. The principal said they are following the steps I'm the behavior plan. But overall having his teacher put us super disregulating for him.

Questions for other folks:

1. Any suggestions on how to prep him for this? I've talked to him about it. Make sure he's got fidgets, eats a good breakfast, takes meds etc. anything that worked for your kids?

2. The principal called me today and said we didn't need to bring him home early but next time it happened we would have to, to be on par with other students consequences. We are going to keep him out of school tomorrow for a doctor's appointment. But otherwise should we just keep him in school as normal even though his teacher won't be back until next week? And we may likely see more incidents? 😭

My son is 3, he’s been making tons of progress but has lots of behaviors and feelings from sensory stimulation.

He’s recently become obsessed with the song Life Goes On by Oliver Tree. It’s super cute, he knows all the words..can even read them from putting the lyrics up on the tv. It seriously regulates him so well but in so sick of the song 🤣 I’m trying to make him a playlist so at least there’s a rotation. But I’m seriously stuck trying to find songs bc he genuinely only wants that song. Pls help with suggestions

My child is 7yo and 9mo level 1 autistic (I suspect he’s become level 2)

Are there any medications a pediatrician can prescribe without a psychiatrist?? My child is extremely sensory seeking to his own detriment and at times, myself as well. Usually it’s just jumps from high places or slamming himself on the bed, couch or floor. We do not hit or throw in this home. Today my child decided to stand up while we’ve all been cuddling and having a lazy rainy Sunday, and just throw a very hard plastic sippy cup at my head from across the room and now I have a very large goose egg on my forehead. I seriously need a solution yesterday. Please any recommendations and if anyone else has dealt with the same please tell me how your family survived.

My son is 5yo and just started kindergarten this September. Since day 3 he has been pushing other kids and it looks like he also grabbed some of them by their hair and "knocked them down". Not in an "aggressive" way (nobody got hurt), but definitely not an appropriate interaction. For context, he is minimally speaking - i.e. has some words and can make basic requests but is far from being conversational. He also struggles with receptive communication, so having a conversation about what happened, making him apologize, etc. doesn't seem to improve the situation. In general he is a very happy child. He doesn't show distressed behaviours, anxiety and has never had other types of aggression toward other people or self-injury behaviours. He is a very active boy and fits the sensory seeker profile, so sometimes I wonder if that's a sensory thing. I'm so concerned about this for several reasons! First, because safety is always our number one priority. Not only his safety, but the other kids as well. I literally have nightmares about him hurting other children!

I'm so lost about how to solve these behaviours and could really use some suggestions, perspective and advice from those who have had something similar. My biggest concerns are:

1. This is not a new behaviour that came with the transition to kindergarten - which I know is a big transition and he is probably overwhelmed. This is a behaviour we saw previously in his preeschool, although not so frequent. So overall, it's been happening for probably 10 months or so. He had 1:1 support at preschool and the staff was able to avoid a lot of these behaviours, but it did happen at least 1-2 a month. Once we noticed this was not going away, we hired a behaviour consultant who went to observe him at preschool to identify triggers and come up with a behaviour plan. That was the most useless thing ever, which brings me to my second concern:
2. Because the behaviour was not a daily thing happening at preschool, all the 10 visits of the behaviour consultant to the site coincided with him not doing anything bad to the other kids! So she relied a lot on other staff input to troubleshoot and come up with a plan. However, we have never been able to identify 1 or a couple of triggers. It seems to happen for various and random reasons, which makes it impossible to work on the root cause. It happened when he was too happy/excited during an activity, when the room was too loud or other kids were crying, etc. But a lot of times it happens "out of the blue". He will stop something he is doing, go across the room to push someone and he is off. He is not laughing afterward, looking for a reaction, trying to play a game. He is on to the next thing, which is always something completely normal like a play activity.

How on earth are we going to stop this if he cannot communicate why he does what he does and we don't seem to understand the cause after playing this super detective work for almost a year? I hate that this is happening to other children and also feel that he is already target as the complicated child in the classroom - which I understand but will make things even more difficult for future interactions with his classmates.

My autistic son has an IEP and BIP, but the support and accommodations he’s supposed to receive haven’t been consistent. When those supports were missed, he did not always have the same access to instruction, classroom routines, or strategies intended to help him participate and regulate. I believe this may have contributed to difficulties at school, including repeated suspensions and lost instructional time, although I’m seeking a formal review to better understand the connection and ensure his needs are being addressed appropriately.
After multiple attempts to address these concerns, I’ve filed a formal complaint with the school district seeking accountability and an impartial investigation.
An IEP is supposed to provide support, not just look good on paper. Our children deserve consistency, appropriate accommodations, and access to their education.
California parents, have you dealt with an IEP not being properly implemented? What steps actually got your district to take action?
I’m looking for genuine experiences and advice from people who understand special education. This is about student rights and accountability.

My daughter has Level 3 autism, and some nights are better than others when it comes to sleep. I’ve tried bath routines, melatonin, no tablets or bright lights before bed, calming lotions, heavy pillows, and other things to help her settle down, but she still has really difficult nights sometimes.
This will be the third day she has missed school this week because of lack of sleep. I personally refuse to send her to school exhausted, especially since she’s still in public school and we’re currently waiting to hear back about her IEP.
I’ve honestly been considering homeschooling her because I feel like it would allow us to work around her schedule and sleep needs instead of having to wake her up early when she hasn’t slept properly. She also doesn’t seem to enjoy public school and actually prefers the therapy sessions she receives outside of school.
Right now, it sometimes feels like school is just babysitting her for the few hours she’s there because I don’t see much academic progress, and she needs so much more individualized support.
My biggest concern is that the school will eventually give me a hard time about her attendance. Has anyone else dealt with something similar with an autistic child? How did you communicate with the school about absences related to sleep and your child’s disability? And if you decided to homeschool, how did you handle the transition?
I’d really appreciate any advice or experiences from other autism parents.

Some one asked me how we did it, I replied in a comment. But it deserves a separate post. So here are the steps:

STEP 1: Accepting that our daughter needed extra support. This was really hard, and if we did not have our older daughter, this would have never happen so early: when she was 12 months. There are also great YouTube channels with parents and kids showing symptoms retroactively.

STEP 2: We freaked out

STEP 3: I started reading about it. There are so many great books about autism (I did not read them all off course) but my favorite is Temple Granding "Thinking in pictures". Mary Barbera "Turning Autism Arround" helped me assess my daughter and discover her level.

STEP 4: Start with table time. Ana was 2 and I started working with her. This was after I finished "Turning Autism Arroud" and learned the first exercises I can do with her and tricks how to get her to do table time. After first 5, 6 days, she loved it. All we needed was a good reinforcer, and since my daughter did not eat anything excpet baby food, and did not drink anything except water, to soap bubbles were our only option and they worked!!! 🎉 Thanks Mary Barbera.

STEP 5: Reinforce pointing gesture. That was the first step of teaching her how to communicate. The goals was that my daughter consistently and intentionally points to objects or when shee needs something

STEP 6: Learn to name things. Again, table time, lots of pictures, little books with animals. And thje key thing: a box with a slit in it. I take the picture, name it three times, she puts it in a box. When she repeats the word, I do a crazy celebratino 🎉 Thanks Mary Barbera :)

STEP 7: We got the therapies: sensory, occupational and speech 🎉 Ana was three years at theat time.

STEP 8: Increase vocabulary. More and more pictures. More and more therapies At one point, I could not print them all and I wanted her to learn more. I've noticed she loves You Tube Kids, so I build an app that looks similar. Click on the picture, the sound plays, Ana repeates. She accepted it and started repeating new words the next day

STEP 9: More and more therapies. Sensory and speech: two times a week. Occupational: two times a week. At home, any time she wanted something, I waited for her to say it. At first that was one word, later "want water," "want cookie."

STEP 10: understanding questions. Now here is where the app really pushed us forward a lot. Together with our speech therapist I've put some frequent exercises. That was the first thing in the morning she did: take the app and click through Questions exercises and repeating and saying answers.

STEP 11: "Tooshie hurts" "I want food" "Want go home" " Want go cousin", these are first little sentences. We are so proud of her ❤️ 💙

Long way ahead of us. But it is much easier when you see some progress. It is realy not easy, but never give up

For context I am not a parent, but I am a brother of someone who has severe autism. Growing up he would have a moments of lashing out, but it wasn’t as frequent as it has been the last few years or so. Couple his aggression with his severe OCD and my parents have to walk on eggshells throughout most of each day with him. He used to be able to wear any type of clothes he would be fine hanging out with with anybody with autism.

Over the last few years, his OCD has gotten to a point where my parents and I are struggling to figure out any sort of solution. He can only wear plain clothes with no designs or anything on them, but a plain color. usually every week, my mom and dad have to buy new clothes for him as there is something off about the stitching on some of his clothes. Most of time it is invisible to the naked eye and we can’t even tell what the issue is.

His latest issue is with something on his nail on his thumb that he thinks is broken. my parents took him to urgent care to have a medical expert explain to him that there is nothing that you can do other than wait for the skin to grow back. He ended up lashing out and screaming obscenities at the people at urgent care. When he gets to a point where he’s lashing out his default is him says he wants to commit suicide and take a suicide pill.

My parents have tried numerous psychiatrist, respite care workers, but no one can understand exactly what he goes through each day. I don’t know the type of medication that he is currently on, but I don’t think it has ever really helped him. Not living with them anymore I am not able to see every day, but I know things aren’t getting better and I need to find some way to help out. At this point. I’m just venting and looking for support or any advice that anyone may have. He spends a lot of his time going on the computer and looking up anything to do about any movies whatsoever is truly a walking encyclopedia of movies. He loves to bounce on an exercise ball and has recently lost 100 pounds through hard work and dedication on the treadmill every morning during the week. I know he can do anything he sets his mind to but his anger and severe OCD is such a distraction that he can’t focus on anything else. This is my long worded plea for any kind of support or advice that anyone may have. Thank you.