My autistic son joke- hope this can give all the parents a moment of joy.

That's all.

Are we supposed to get upset? Respond like you would at work - neutral, solution oriented, detached? I just don’t always know the appropriate affect for this.

Do the teachers just want us to perform disappointment when our lives are disappointment? Do they get how hard this is, how sad it is?

Yup, my kid is an ass. Yup, let’s get that functional behavioral plan revised. Yup I wish to anything my kid was normal.

I dunno, help? How do you deal?

After 3 long years on the CAMHS waiting list, multiple suspensions from 2 separate mainstream schools and now a place in a SEN school, we finally received a diagnosis of autism and ADHD for our 7 year old.

The diagnostic team recommended medication but we now go on a waiting list for this, which I've been told is at least a year. I cannot believe how broken this system is - why is there another waiting list for medication?! Surely it just needs another clinician to look at the diagnostic report and prescribe?

Our child is incredibly aggressive, won't sleep, won't eat, can't learn at all, and I really hope medication will help. Has anyone in the UK been able to get medication privately after a CAMHS diagnosis instead of lingering on the waiting list for years on end?

my son is 3 1/2 and these meltdowns are making me insane. they last anywhere from an hour to several hours with no end in sight. and it’s over everything. he’s screaming the absolute second he wakes up. just wakes up yelling at me about something. i don’t have breakfast ready instantly? screaming at me. breakfast is ready? screaming. he’ll scream at me about what’s cooking before i even have anything pulled out to cook. tv isn’t on? screaming. I turn it on? he’s screaming i turned it on.
“no bud. you can’t kick your sister in the chest.” absolutely losing it for hours.
I. CANT. WIN.
Nothing i do is right. there’s no such thing as trying to stay a few steps ahead. my patience is absolutely gone.
and it’s not just yelling and he’s over it.
no.
He’s screaming to the point the noise level genuinely makes me nauseous. i am TERRIFIED the neighbors are going to call the cops thinking im abusing him because he screams as if his life and everyone he loves is in immediate danger. I’ve started completely avoiding going into public because now he does it everywhere. it’s exhausting. i’m overwhelemed and overstimulated and done with the day by 7am.
no one seems to understand and just says “yea toddlers have tantrums” this goes SO FAR PAST a regular normal tantrum. no one around seems to grasp just how severe these meltdowns are. they ruin our day, our plans, at this point they seem to control everyone’s mood. my patience to stay calm is gone. i hate yelling and being frustrated and it feels like that’s all i am and do anymore.

I completely lost my son I don’t know who he is anymore. He can’t go anywhere he meltdowns and has explosive episodes over everything he sees he can get his way
He is almost 8 now on the 29th will be his birthday we did meds he is in ABA he had structure routine

My son is 6 and a half and level 3. Non-verbal and in SPED. I have had NO ONE to help me with anything. Since he got diagnosed two years ago I didn’t know what I could do for him. And now that I know more there are so many wait lists for therapies. He is still in diapers. He won’t use his AAC. He throws these massive meltdowns when he doesn’t get what he wants and usually what he wants is something dangerous (climbing, unbuckling in the car, etc.). I am at my wits end and I hate myself for being angry with him. His father lets him do whatever he wants and I am so angry about it but that is also the only time that I get a break from it all. I have an 8 year old daughter who I suspect to also be on the spectrum, however she has fewer needs than my son. I am so scared of raising a glass child because her brother needs so much that I don’t have much left. Does it ever get better? Do the wait lists go down? How can I help my daughter not feel left out when I have no one who will help me with my son?

My son is almost 6 and was diagnosed with Level 1 autism when he was younger. He also has ADHD and anxiety.

He’s made incredible progress since age 2, especially with language and communication. He’s bright, affectionate, academically strong, and genuinely wants to connect with other kids.

Our biggest struggle right now is social skills. He wants friends but has difficulty understanding social cues, joining play, and maintaining interactions. He often asks other kids lots of questions without realizing they’re losing interest.

Some days I’m so proud of how far he’s come, and other days I find myself crying and worrying about his future. I worry about friendships, bullying, loneliness, and whether he’ll ever feel truly accepted by his peers.

I’d love to hear from parents of older kids who had similar struggles at this age.
Did their social skills improve as they matured? Were they able to develop meaningful friendships? What helped the most?
I know every child is different, but today I could really use some positive stories and hope. ❤️

Hi everyone,

My daughter was diagnosed at age 2. She's hyperlexic, very friendly, and full of energy. When she was in kindergarten, she had two friends with whom she regularly played who also showed some degree of neurodivergent traits.

For grade 1, she has started at a new school with none of her kindergarten friends, and she has started confiding in us that she is sad because she has no friends and no one wants to play with her. This whole situation breaks my heart. she is very outgoing and has no trouble approaching kids, so it's not due to shyness or a lack of trying.

She describes going to different kids during recess and lunch, asking to play, and being told no. She says that she spends these times sitting by herself and crying. When I've asked school monitors if they've observed anything, they say she's fine and just likes to play with other groups.

For background, she's always had what you would call a bossy attitude to playing, always geared towards winning. I blame myself for not discouraging that more when she was younger. In all likelihood, it's probably observed behaviour from me as I grew up in a home where competing was encouraged.

The tougher part is that to some extent, I can see why some kids may be put off from playing with her. I recently started taking her to some indoor play areas and watched how she interacted with new kids. It's always the same pattern. She approaches some kids and asks to play, they say yes, they start playing, and she immediately begins trying to control the game ("you go there!" "I have made this a safe spot. You can't tag me."). After a while, the kids either begin to ignore her, or they outright tell her that they don't want to play with her.

Then she either begins to cry, or she continues trying to play with them in the sense that she runs into the area in which their playing, yells out commands, but nobody is acknowledging or reciprocating her activities with her (e.g. The "it" person in a game of tag will run right past her to go after others).

I've tried explaining to her what cooperative playing looks like ("it's not about winning" "try to have fun, not control the game" "ask what they want to do instead of trying to make them do what you want") but none of it sinks in. I've tried playing with her and trying to demonstrate cooperative play, but she does what she usually does.

We're working with her OT on this and we've had her in social circle classes for over a year, so we're hoping she'll understand.

We've begun reconnecting with her kindergarten friends for playdates which go well, but I now see that these particular friends have no problem being told what to do. I think we were just lucky that she happened to meet them.

Has anyone experienced this with their child, where to some extent, you can see why the other kids are rejecting them?

If she didn't care or preferred to be alone, that would be one thing. But I haven't seen her this sad before, and I just want to help her.

Hi all, first time poster. I am at my wit’s end with my daughter, who has never liked brushing her teeth from day one. She’s now 5 and we have this issue every single say and is wearing me down.

She was preemie baby and I was told at the time by my OB that she runs the higher risk of being autistic because of it, and I’m also neurodivergent but here in the UK it takes years for diagnosis, so I don’t know if this is autism or if she just hates brushing teeth.

We have tried everything over the years: different flavour toothpaste, different types of brushes, different tooth brushing games, rewards charts, stickers. We’re now having to move into punishment territory (no story before bed etc) if she doesn’t do it and is breaking my heart. Growing up neurodiverse with parents who treated me like a bad child/problem child and treated my issues like character flaws, I don’t want to do this to her. But what more can I try?

Please help, any advice would be hugely appreciated!

My husband has a special needs sibling, of course I got married into this knowing fully that one day he will be our responsibility. To me, he’s the brother I never had. I do love him and try my best to have him involved, take him to do fun things.

But no matter how hard I try to be a sister or friend to him, he just seems to never accept me. His only way of communicating with me is usually making fun of me honestly, and he really tries to get under my skin. For example, last night, we were at my MIL house, and my husband was eating some kind of candy, as soon as I were to ask for some, my BIL shoved everything in his mouth in an instance. Or when I want something to drink he’ll hide it somewhere until my husband comes around to offer it to him. My husband has had other girlfriends in the past, and friends who are woman, and my BIL is so incredibly nice to them. Talks about them, hangs pictures on his wall with them even though they didn’t really have a relationship like that. So I can actively see that he is capable of treating people very nice, he is very sweet and loving. Just not towards me, and it really downs me.

I try and talk to my husband about it but he just won’t understand no matter how I explain it. It’s very hard at times to go hang out all together and know that I will be treated bad. And if my husband treats me lovingly his brother seems to get upset as well. I think this all comes down to some jealousy to be honest. My husband moved out as soon as we got married, of course less time is now spent of them seeing each other. And I know that’s how he views me, he has no issues with the other girls because, they were teenage relationships, no real responsibilities, my husband was at home all the time with his brother. I know deep down maybe in how he views it, I stole his brother away from him. No matter how much we try to be around, or how much I genuinely try to get him to like me in any way, it doesn’t work. We are going on 3 years married now, and still. It’s like things keep getting worse.
If there is anyone who has been in a similar situation or has any advice I would highly appreciate it.

My birthday was yesterday. My 3.5yo daughter is autistic with a PDA profile, and she absolutely hates birthdays. For the last two years, we haven’t celebrated them in a traditional way at all because it just isn’t worth the meltdowns.

I have always loved birthdays. Since I was a little kid, I made handmade gifts for my family, and as an adult, I’ve always planned my friends' and family’s birthdays. I just love making people feel special on their day.

This year, my mom FaceTimed me to wish me a happy birthday. My daughter was there, and she cried maybe four times just during that short call. Later, my best friend who lives in Europe called. To be honest, I actually canceled the call the first time because I just didn’t want to deal with any more tears. I felt guilty and called her back, we only get to FaceTime maybe three times a year because of the time difference, and she was so excited to chat. But as soon as she wished me a happy birthday, my daughter started crying again, and cried a few more times while we talked.

Today I got a small cake. After dinner, my husband put a candle on it, and my daughter blew it out after screaming “no singing!” (We haven’t sang happy birthday in years). I told her we weren't singing, but we were celebrating my birthday. She just said "no," and "let’s eat cake."

Now she’s sleeping and I’m just crying. I'm not crying because I expected some big, perfect celebration. I'm crying because those phone calls with my mom and my best friend should have been fun moments. I'm grieving because autism has robbed us of so many of the little things that make life happy.

Because of her PDA profile, she tends to be negative about everything, nothing is ever enough. It's just hard. Sorry for the long post, I just wanted to vent to people who might understand.

Is there anyone here who took part in the jasper therapy program with their child? How did it go? I’m desperately trying to find someone who could provide parent coaching internationally (we live in Europe), but I would also really appreciate any kind of tips and advice from parents..

Hey lovely people!

I’m not sure if this is the right place to post but I’m dating an amazing woman with a daughter who has autism and GDD (she’s 6)

I’ve only met her daughter a handful of times and she’s quite standoff-ish with me (which is understandable)

I’m trying to be as supportive as I can and I’m reading some books and doing courses so I can understand better. I’m just looking for some advice in what I can do to support them both. If people have experiences, anything at all. I think it’ll take time for her to warm up to me but I’m just looking for experiences to know if it just takes time? I also just want to care for them both the best I can over the years so any advice is welcomed :)

My recently-turned seven-year-old son has had an autism diagnosis for about a year -- we knew before then, but schools would repeatedly tell us he was "fine" except for an aide. His pediatrician diagnosed him with ADHD, however I believe that is primarily sensory seeking/PDA behavior (doctors appts. stress him out and essentially bring out the "worst" (jumping, yelling, running etc.), but I digress. Both his school & private neuropsych exam noted that his ability to complete cognitive assessments affected scores and said scores were likely NOT accurate, I agree completely. It seems that a lot of the professionals working with him are attributing his inability to complete these tasks to attention, when I know it is largely comprehension (due to language processing difficulties) and his ability to respond to questions/the stress caused by demands. At home we have much better success than is reflected in his at-school-work. He does very well with sight words, he can spell/recognize/does understand the meaning. but if you were to ask him the "meaning" he mostly would not be able to, despite recognizing the object or concept. So we are dealing with a major language delay, as well as his difficulty with demands at school. In OT they were working on skills he is quite capable of -- he is very physically independent, gets his own food, can make a sandwich, (he does put his shoes on the wrong feet no matter what). We seem to have this issue across the board -- testing is absolutely not reflective of his ability -- and I am not sure how to communicate to the school staff that he does understand more than they think - but also understands less at the same time. He understands what one object and another object is two objects, and can write 1+1 = 2, but I don't know if he is fully connecting the two. I know I'm ranting just looking for insight as to what sort of IEP academic adjustments some people may have made for children with similar circumstances. I'm sure you all understand I could go on and on describing his behavior -- trying to be succinct so his support team can get a good picture!

Hello,

We are occupational therapy doctoral students at Nova Southeastern University conducting a research study on the experiences of parents and legal guardians caring for medically complex children. The purpose of the study is to better understand how caregiving responsibilities may affect daily activities, routines, roles, and participation.

We are reaching out to request permission to post our IRB-approved recruitment flyers in your online support group. Interested individuals can use the QR code or REDCap link on the relevant flyer to review information about that study component. Participation is completely voluntary, and participant information will be kept confidential.

Thank you for considering our request.

Please delete if not allowed.

My son has constipation and withholding issues and consequently soils his underwear constantly. This past week we’ve been struggling with getting him cleaned out, and he just won’t go unless we give him an enema. In my research I happened across the MOP method, and I’m wondering if anyone has used it. I have questions.

1. Is it safe to give daily enemas like that?
   
2. Does it set the child up to only be able to poop with an enema?
   
3. Does it actually work?

Any feedback is welcome!

Our extremely picky eater did about 6mo of feeding therapy and unfortunately I didn’t find it that helpful? it was mostly food exposure through play and it was really hit or miss during sessions of on much he’d participate and we didn’t add any new foods to his list. We had to stop abruptly due to an insurance issue, but are now looking to start it back up again. I also understand that feeding therapy is a slower to see progress thing and I may just need to give it more time.

1. For those that had a more successful feeding therapy experience, what made it helpful? What training did your provider have?

2. Has anyone had any luck with an online program or resource to help?

In your experience, what are things that you liked/considered best practices for ABA providers such as BCBAs and RBTs?

Should parent meetings be structured? I’d love to get your feedback.

My daughter is 5 and was diagnosed early last summer with Level 1 autism. Was not a surprise, was in fact very validating of my concerns over the years. She's made big progress in her communication abilities the last several months and now you can have a real back and forth conversation with her which has been incredible.

Like many kids her age, she's become aware that people die. We've had pets die, so she knows that animals "pass away" and then we don't have them anymore.

Last week we were talking about our chickens and she said something about them not passing away and I said "well honey, everything passes away eventually" and then something clicked in her brain and she said "But Granny...Granny isn't. Granny is at Granny's house. PopPop is at Granny's house" I cried then and I'm crying now, because I think I witnessed my kid realizing her grandparents/my in laws are going to die someday, in real time.

And listen, they are the best people. We, and many others, will be devastated when one or both of them passes. But for my daughter...She knows, through everything, that Granny and PopPop are there with hugs and snacks and love. They are Her People.

They are also almost 70 and my mother in law is not in the best health, although our daughter does not know that.

How do we handle this? I don't think it's healthy to shield kids from the idea or reality of death, but I try to be really general with her because she ruminates on things and takes things very literally. So we do talk about it in broad strokes.

But when it does happen someday...how does that go? I'm already thinking, when that day comes she'll need therapy with someone who works with kids on the spectrum. Maybe it'll be so far off that she'll be an adult. But nothing is guaranteed, and of course she'll still need our support then.

Just a normal Thursday, literally crying over my keyboard while contemplating how to eventually explain that Granny is gone and she's not coming back.

My 2.5 year old autistic child is pretty much still in the exploratory phase of playing..he loves spinning, watching, touching, throwing, mouthing toys, and rarely play functionally with them - doesn’t seem to know how and 0 interest in functional play. I keep modelling and modelling, getting different set of toys, but hardly any improvement in his play skills over the last couple of months. Is this an indicator for a possible ID, profound autism, autism severity..? Can this quickly improve by itself, so that my kid catches up to his peers or what is the most common prognosis for his current play level?

Decided to commit and start potty training our 4 year old level 2 autistic boy. It’s week 2 and I knew it wouldn’t come easy but we made the decision simply because we were going through a lot of diapers. He was asking for a change every time he peed. We figured he probably felt very uncomfortable after every pee, just the warm wet feeling. I thought maybe we had an advantage but no not at all. He pees and has gone poo in his undies and each time he seems confused? Like he doesn’t understand that we don’t go in them. With the diapers he would tell us when he has gone. He is non verbal but his vocabulary has grown. He’s capable of telling us when he wants to eat, when he needs more of something. When he wants to watch a movie. Things like that. I’ve done research and I just know he is most definitely a gestalt language processor. And I recently learned about pathological demand avoidance. Which when looking it up, he checks off everything on that list. A lot of it just made sense. I don’t mean to go off topic but I just thought I’d give some more info to better understand what we’re going through here. He was in ABA for a little for a year until unfortunately his BT could no longer work with our schedule. But in that time they strongly believe that he has enough vocabulary that they don’t think he needs a AAC device, his mom and I also felt that giving him one he’d completely rely on it and not want to talk himself. But hey maybe we’re wrong and maybe we should, i figured maybe a speech therapist could help decide this for us. But anyways, potty training has been stressful, again only 2 weeks in. I just wonder what it is that we can do to help him understand, to help him tell us when he thinks he needs to go. Even when we can see he might need to, he immediately just says “no no no no” when watching movies we have to make sure to pause them or else he gets very upset.

This is really long but please- no judgment here. I am just gram trying to be a support to three individuals the best I can- but slowly burning out

This child is so complex and really seems to be a sprinkle of everything in her genetically or other issues too. Thank God she starts psychiatric evaluation for children soon to figure her out. She’s being evaluated for Tourette’s, autism, and PANDAS related behaviors so far.

She has a mom who’s bio polar, a dad on the spectrum with Tourette’s and was born with larynxgomalatia which is still causing issues with swallowing chewed foods. She has selective foods likes which change constantly due to what I think is also related to the pandas possibility. But maybe not-maybe just the autism possibility. This is limiting her intake of foods and nutrients and obviously contributing to nutrient deficiencies it would seem. We find our way around that but it’s far from stress free.

I bought all new nice clothes for her for school this year that she loved . She wore most once and that was it! Now she doesn’t like them. She picked out her back pack to go with K-pop clothes she chose and 3 weeks into school those were for babies. I and we can’t figure out what is possible autism , a mood disorder, maybe pandas related, or something else.

I literally have nearly emptied her drawers from clothes that she picked but refuses to wear. She now has limited items in bland colors with no bright colors or pink or purple. If there is even a speck of pink or purple she refuses to wear the item- even her new sneakers that we brought for school that had a tiny speck of pink near the aislet -nope!

It’s so frustrating and I don’t want to make it about me but how to get through this with her is the challenge.

Now my other frustration 🙄 , is she constantly wants “play things” and never plays with them after. Yes, we limit the kids you tube now because of that all it. Everything she does for a new fun activity is a week long obsession then poof! It’s not fun anymore. Uhg!! She started playing with her jumper a couple of weeks ago and was getting really good- she could only go backwards though-autism?? But then not interested anymore. Even clothes- she loves something and will promise to wear it and the next thing you know she hates it even better she wears it sometimes.
Literally all she likes for the moment are squishies which she is overly obsessed with. But that doesn’t stop her from asking for other toys that would just be opened and left.Then there are school needs like outer sweatshirts backpacks and water bottles which are like the clothing issue- here today won’t use them tomorrow.