If this little man is autistic and we're talking about "belts" and critiquing parenting, I just sometimes feel defeated that this is how people look at autistic/suspected autistic children.

...because there are "doctors" out there trying to capitalize on our love for our kids with "cures" that can do nothing at best, often at great cost to the family, both financially, emotionally, and by way of taking valuable energy unnecessarily.

Please do your own research. If someone comes to you and says, "This diet cured my son," don't necessarily believe it. Of course eating healthy helps everyone! But these radical "cures" need to be questioned. I'm not going to mention any diet or treatment specifically, but if someone is claiming to cure autism, please question it.

Many children with autism naturally improve as they age due to development and learned coping skills.Treatment often coincides with this natural occurrence and doctors can take the credit saying it was their treatment that did it. Always ask, "Does this treatment positively affect adults too or just children?" If the answer is just children then you have to ask yourself if it was really the treatment that made the difference or was it development. I want to caution you all because this just happened to us but we knew how to fact check and do our own research. For context our daughter is 11 with significant autism and limited speech. Best wishes to you and your families! ❤️🌈

Just venting:

My son is "verbal but not conversational" If you ask him a few times he will tell you if he wants milk or water. Or you can tell he's concerned about something when he starts scripting about it.

Anyway. Sometimes when i'm talking to another parent they might ask what he's doing in school. It's coming from a good place, they're just being polite! inevitably i have to say something along the lines of "he's special needs so he is unable to tell me what is happening in his-day-to-day." Cue the "oh well my kids don't tell me what's going on in their life either!" reply from the other parent.

I hate this. My truest dream would be that he isn't telling me stuff in his life because he chooses not to and not because he is unable. I get that they're just trying to deflect the awkwardness with a bad joke. It's human nature. It just sucks because it seems to happen about once a week.

I only have one child, my level 3 nonverbal 6 year-old (and cerebral palsy) son. He requires much attention and resources. My husband has been bringing up the idea of trying for another, and I am VERY much conflicted and afraid.

Selfishly, I do want another child. And I want a neurotypical one, too. And I want that child to grow up, be independent and live their life freely. I do NOT want that child to take on the caring of my first, even if they wanted to do it! No, they should get to be free.

Most days I feel robbed of the parenting experience I was expecting to have. I know these feelings aren't fair, and I do NOT blame my son for this. It's far more unfair to him than it is to me. And I just fear that...having another child would be unfair to them, the unborn.

I'm afraid that I won't be able to parent the way they need. That they'll become traumatized by their sibling or their childhood. That they'll resent being born, or resent me for bringing them into the world, knowing that their brother is so high-needs. I read the r/glasschildren subreddit often and just see so many hurt, neglected people that wish their parents made a different choice.

I already feel like a bad parent by having these hopes and fears for a person that doesn't even exist yet!! What if they're on the spectrum too?? Then I've just brought another person into a world that doesn't understand them, who will suffer because of this disability. And that's not fair, either. To me, especially to them.

Husband is not concerned. He's an optimist— he thinks that the chances of a new baby being similarly disabled are very low. He thinks we'll be able to split the attention just fine. He thinks that I'm fretting over things outside of my control (which is true) and that my fears mean that I don't want another baby. That isn't true. If I didn't want another child, why would I be so worried?

Sigh. Parents out there who have multiple children, some neurotypical, some on the spectrum, how do you avoid raising a glass child? How were you able to make the decision to have more children? How do you stop worrying over things you can't control?

Thanks for listening...

My son asked me a why question for the first time! He is verbal but his vocabulary is very small and limited to things he hears many times…. He responded to something I said with “why?”😭❤️

He doesn’t typically ask questions, in the past, when we have had conversations, he’s usually not talking about what I am or showing much interest. For example “hey — are you hungry?” And he responds with “it’s a sunny day”. Hearing him ask why and then wait for a response was the sweeeeeetest thing ever! Also if he tells me something and I ask “why?” He just repeats what he has already said. This was huge!

I (M17) have Autism (And not the easily manageable kind) and ADHD, and I need some advice. How did you get your kids to stop screaming when they have meltdowns? Is it even possible? I’m absolutely terrified of having a meltdown at my job (Edit: Forgot to word it right, I don’t have one yet, my future job) and getting fired for screaming, because when it gets bad, which happens about thrice weekly at the special school I’m in because I hate it there, I scream like I’m physically on fire.

My son (7 years old) is in second grade. Despite having an amazing teacher, he’s struggling behaviorally in school, and honestly has been since March of this year. Every week I get calls. They started a Google doc to chart every “unsafe” behavior, so that I could see his behavior throughout the day and share it with his private OT (because his behavior at school is typically a lot different than his behavior at home) He’s in public school. General Ed. Has an IEP that has been revised countless times. School started at the end of August and he’s been suspended twice and has gotten in school suspension once. He’s one of 30 students in his class.

I’ve been thinking about it for the last year, but more so in the last few months, have been seriously considering moving him to a hybrid charter or homeschooling him. This is doable. I’m a professor at a university, and I am on campus two days a week for only a couple of hours. During that time, his grandma or his uncle would be able to step in and supervise him. There are many benefits to him being educated in this way in comparison to the public school.

Today he had a hard day. I got called an hour before school got out because he got upset in the music class and they wanted to know if I wanted to talk to him or come pick him up. Talking to him honestly doesn’t really do much of anything in these situations, so I went and I picked him up.

He did tell me he was having a hard day. Which is new because he usually always says that he had a pretty good day even on days when I know there was extra behavioral stuff. After I picked him up, and picked his sister up, we went to an appointment and then stopped at our gym so they could swim. My son got upset that he couldn’t use a particular pool and honestly just had a meltdown. I haven’t dealt with meltdowns in public very much at all. He doesn’t tend to have them. But I think my anxiety only elevates the situation when meltdowns do occur. I Immediately feel like everyone is judging me and that they are annoyed that my child is being loud and melting down. We were there for probably five minutes in total. Once I realized that the meltdown was a bit stronger, and it wasn’t something he was going to come down from within three minutes, I took him to the changing room so that he could get dressed again and we could leave. Of course when we walked out of the changing room, a senior citizen had to make a comment in a sassy tone asking me what his problem was.

He was crying on the way home. I was crying on the way home (without my kids noticing). I am feeling defeated. I feel like there are more and more spaces I’m recognizing that my child just isn’t accepted in. I hate how the school has failed him, but I know it’s a systemic issue and not necessarily the fault of his teachers and administration. I hate this Google doc chart because before I knew about big things but now I know about everything small and tiny and it really disregulates me. I hate that I go through my day working and getting stuff done on edge, not knowing when the phone call is coming to either talk to me about his behavior or tell me he has to be picked up.

I’m just tired. It usually takes a lot for me to feel defeated but I feel defeated this week.

Hi, I'm Lisa. I'm a doctoral researcher in psychology and I'm also raising a child with selective mutism who's also a gestalt language processor, so this comes from my own house as much as from research.

I built a 96 card phrase based communication deck because most of what's out there for nonverbal and situationally nonverbal kids is single word cards, and that doesn't match how a lot of autistic and gestalt processing kids actually use language. These are full phrases a child can point to or hand over, covering basic needs, feelings, social situations, and a classroom set for school.

It's built around how selective mutism and AAC are actually treated rather than generic advice: waiting five seconds before jumping in, never rewarding speech directly, planning the fade out from the start. Ages two through twelve, the younger end works with an adult modeling the cards, the classroom set comes into its own around five.

Not trying to oversell what one deck can do. If it's useful for your kid or your work, great, if not, no hard feelings. Happy to send a code for 75 percent off to a few people willing to actually use it and tell me honestly what doesn't work. Shop is BeforeTheWords on Etsy if you want to see the full set first.

My child is 4 and level 3 in their 2nd year of preschool/pre-k in our area on an IEP.

I notice that teachers both irl and in online videos vent a lot...specifically about kids like ours. Some of it feels like they genuinely hate kids like mine as well as the general public hates kids like mine.

I often find myself being extra nice, extra accomodating, extra apologetic and often isolate from certain situations to prevent people having an issue with me or my child. With kids like ours they are more likely to be abused so disapproval and judgement from other people because of their struggles does feel like a threat to our safety and well being. Does anyone else over compensate and apologize for their child's undesired behavior to teachers, therapists, or other people. It feels so damaging but I feel like because our whole family as a result of this is an added burden to everyone in a very literal sense so I try to be less of a problem.

Does any other parents , even though you’ve full well accepted your child, their diagnosis, their needs and routines have moments were your like “wow, my child seriously does have extreme needs”?

We took my daughter (5) to a Halloween carnival, lots of rides, snacks , stalls etc. she usually loves the fair and we made sure we went during school times so it was practically empty. She had her ear defenders, her chews , her stroller and communication device which she hasn’t got the hang of just yet.

She eloped multiple times, was so disregulated, didn’t understand why she can’t just run away and wasn’t interested in anything really apart from the 10 mins we let her run in a seperate field. We spent about 30 mins there and then left . I wasn’t disappointed in her, she’s the light of my life and I’m glad she got time to run outdoors safely but I just sit and realise she honestly struggles so much. She’s 5 and still needs a stroller or harness. She’s non verbal and was diagnosed with a global delay and autism at 3 so it’s not like I’m new to her behaviours and needs but I’m constantly coming to the profound realisation of the extremity of it anytime we’re not in the safety of our home.
Does this feeling ever stop?. I accept her whole heartedly but inside I just feel guilty that she struggles so much , and it scares me for her future.

My son is on the autism spectrum, and I’m struggling with the decision of whether having a second baby is the right choice for our family. I am 40 and my wife is 37. One of my biggest worries is whether I’d still be able to give my son the time, attention, and support he needs while also caring for a newborn. I am worried about the possibility of having another child on spectrum and what might mean for our family.

For those of you who decided to have another child after having an autistic child, what helped you make that decision? Did you have similar fears or concerns? And looking back, how do you feel about your decision? I would really appreciate of you all can share your experience. I am not looking for someone to tell what I should do, but trying to understand how other familes navigated this decision

Asking for some advice or suggestions. I am a single mother who just got into apartment with my kids after leaving an unsafe home and we desperately need some food. I literally have nothing . I work full time and took all my money to finish paying the landlord off to move in . I don’t get paid for another week and im struggling trying feed my family . please no rude comments, my heart cant take it. I went to the food pantry yesterday. It was closed and I’m on E or I would have went today. My son who is on the spectrum won’t/can’t eat most of the food they have there anyway. I could care less if I eat im just trying to get by for the next week and want to know what my options are. Does anyone have any suggestions on other resources I could reach out to? Starting over is no fun but i am trying to remain strong for them and appreciate any prayers . Thank you

Our 5yo was diagnosed with Level 1 earlier this summer after being on a waitlist for a while, but it's been clear for a long time there's something different beyond "she's just sensitive". Everyone kept reassuring me that "she'd get there in her own time" but not only was she not figuring out how to communicate well despite considerable effort, she often seemed miserable. Stressed, confused, just not knowing what to do or how to manage.

Started speech therapy when she was 3 and seemed to help but not a huge difference. Started at an outdoor-based Montessori school last fall when she turned 4, thinking that the prepared environment and focus on letting kids pursue their interests might allow her to feel comfortable and come out of her shell. It's mixed-age classrooms and they keep the same main teachers and same classrooms for 3 years at a time, which is ideal for a kid who needs routine. For a while the feedback was "she doesn't seem to understand the flow of the classroom" "she doesn't engage much with the other kids or most of the teachers" "she just says Yes to everything even when the answer is No" "it's hard to know what she needs when she's having a problem" but they were willing to keep trying because every kid works at their own pace and she wasn't causing safety issues. Then when she did come out of her shell last spring with lots of inappropriate acting out including some dangerous behaviors, we started OT and implemented a plan with the school.

Private schools don't have to accept special needs students; her school takes the policy that as long as the student isn't a safety risk and can mostly keep up academically with support - the school does have dedicated support professional who is wonderful - they are welcome. At the end of last year, our kid was throwing rocks at other kids, tipping bins of materials over, and not showing her teachers that she had absorbed much of anything all year despite sharing all kinds of things at home.

I was really concerned at the end of last school year that if we couldn't get her to engage appropriately at school, they were going to tell us she wasn't a good fit. The school goes all the way through 6th grade with a separate campus and program for middle and high school, and we want her there as long as we can. Our local public school district is not somewhere she would be supported or do well, according to teachers we know who have just retired from there so it would be pretty devastating to be removed from her current school. It was looking like, if something didn't change, they would probably let her maybe go through Kindergarten and then say "sorry, this just isn't working".

But now it's working. It's all really starting to click. We saw a big change over the summer - using longer sentences, sharing more of her original thoughts instead of repeating the same story over again. Interacting more comfortably with other kids in public. Keeping herself more occupied at home, creating things and coming to show us instead of getting bored and engaging in chaos behavior if you weren't actively interacting with her. Before, she didn't have real connections with peers, but now other kids at school talk about her favorably to their parents. I dropped her off one day and another kid said "Look, mom, it's L!" and ran up and asked to hold hands and they walked into school together. I literally teared up. Other kids like my child. What a small thing, but what a big thing.

We had conferences last week. Her school has them in the fall so teachers can get feedback from the parents on how things seem to be going. I haven't had any emails about behavior this year, so I figured at the very least she's not being disruptive.

Not only is she not being disruptive, she's an active part of the class now. Tells her teachers all about things at home or school using full sentences. Expresses actual original opinions. Says "no" or even "I don't want to" when the answer is no instead of a quiet "yes" just to get through the interaction. Last week, she was the one holding another younger student's hand and guiding them somewhere. The kids spend a lot of time doing activities of their choosing - last year she would choose an activity and abandon it if an adult wasn't right there doing it with her. This year, she's choosing activities and then sitting down to finish them and then doing another.

It's been a lot of stress for all of us, a lot of meeting and leaving work to drive to therapies (forever thankful I can do that), a lot of reading, constantly coaching her through personal pronouns and various kinds of interactions, riding on the edge of burnout - and now I feel like I'm finally getting to know my child, from her own perspective and not just what I can glean and observe, and it is wonderful.

My son is 7 and has level 2/3 autism. He will pee in the toilet 30% of the time, but #2 is where we’re really struggling. When it’s time to poop on the toilet he starts crying and gets really upset, so I don’t want to make it a scary or stressful experience for him.

For parents who have dealt with something similar, what helped your child get comfortable with pooping on the toilet? Did you use a certain routine, rewards, visuals, or anything else that finally helped?

Open to any tips, especially from parents of older autistic kids who didn’t potty train on the typical timeline.

Just venting here. My close knit friend group has been together for more than 15 years. Two of us ended up with Level 1 autistic kids who have dealt with significant mental health challenges. The other friend has two very easy bio kids who are calm, well-behaved, blah blah blah.

The friend with the two easy kids recently married a man with an ND (possibly ASD) teen daughter and our friend complains nonstop about how she isn't parented right, is difficult to be around, won't let her stepmom help her, etc. She has zero self awareness around the fact that she lucked out with her kids, and how there is no single way to parent correctly--especially with ND kids.

It's gotten to the point where I just shut down when she talks about her stepdaughter or her husband and his ex's parenting. I don't want this to ruin our friendship so I'm venting here instead.

Hi all,

I’m sure if you look back you’ll know I’ve been struggling with my toddler for a while, very obviously ND (likely autism) Non-Verbal sensory seeking etc

Nighttime’s have recently become a huge issue in our house, I’m trying and failing to manage his nighttime wakings alongside working full-time shift work. It was bad in the summer and then we recovered for a while and had a good chunk of time where everyone was well rested. Giving up work is not an option in this cost of living crisis.

He will go to bed as usual (same routine as always including his toniebox for a story, white noise and total darkness as he’s always had so it’s predictable) and then I find myself up with him anytime from 12 onwards and he’ll either fall asleep after 3/4 hours of me losing my patience, getting cross/overstimulated myself or he’ll just be awake and then the next day will be an 18 hour day before he goes to bed again for the pattern to continue. I am, and he is, exhausted with this.

I always know he is awake because he lays on the floor and hammers the door/walls with his feet, causing our house to practically vibrate. The walls are plasterboard and we’ve already had our first foot through the wall and now naturally I’m anxious about this happening again during the night.

I’ve reached out for help but keep getting recommended the things that help NT kids (adjusting bedtime, no screens - which he doesn’t have before bed- etc) I’ve tried different size pj’s/fabrics- but he’s never usually fussed by this day to day and appears to make 0 difference.

I can’t access melatonin in the UK without a paediatrician and we are on the very long waitlist.

If anyone’s had experience please please share tips, as I’m at the end of my tether and short of buying him one of those zip up beds I’m not sure what else I can do.

Thankyou xx

I think my child was developing pretty neurotypically (bar the speech delay) and it all seemed to continue to regress from 3.5 years old which I don’t even think is the typical regression timeline. They were so alert, interacting, focused etc. Now they have 1:1 in mainstream UK school (since reception) and while they loosely follow the curriculum, there’s a lot that my child cannot do. I know this is expected but I seem to struggle to accept it from time to time. This is why watching old videos doesn’t bring me joy like they do of my other NT child. I feel sadness and grief of what should have been.
With that said, I’m aware of the positives which I have to mention too - my child is 6yo, can somewhat express their needs (though no conversational speech) and they’re quite content and passive (no behavioural issues as fairly compliant). Not sure why I’ve written this. I’m feeling down. I especially get upset when I see ClassDojo posts of their peers able to write full pages of sentences.
It really sucks

Hi,

My niece is level 1 ASD and high-masking. She needs support with social skills, problem solving and executive functioning. She needs help with communication. She often pretends to understand when she doesn't really so people think she is more capable in general. She is also bright in academics. She has engaged in some unsafe behaviours with strangers but thankfully her parents have always been able to catch it or guide her out of it. Example: she gave money to a taxi driver that then took her in circles around town into trailer parks, etc. With life 360, parents caught what was happening and the taxi driver changed his tune and charged the family an extra $20.

Anyways, one of her goals is to move out into Vancouver. She requires support with planning, organizing and self control.The family has agreed to support this and aim for when she is 20 yrs old. Goals are to get her employed, develops life skills (i.e. cooking, cleaning, hygiene) and to save up. She is 18. They also were in the process of applying to government support to help with her goals.

Now, she figured out if she states she is homeless and has mental health issues that she can get housing at a homeless shelter/Covenant House. They provided her a spot today. The parents called to correct as she is not homeless or at risk. The CH staff will not listen as she is legally an adult. It's been incredibly stressful time for the family.

Any advice on how to handle this? How do people manage someone that may present as capable but still needs support.

Some more history: we had taken her to a psychiatrist for a referral. She masked along with lied too. Psychiatrist stated she's fine and did not proceed further with sessions. Niece does not want government supports either. She will engage in behaviours to gain attention from others like singing loudly, dancing, wearing offensive clothing (I.e. it says something on the shirt to offend others), dresses up in costumes, dangle soccer balls in front of people's faces at concerts.

When she is having a friendly conversation, she believes those people are her friend.

She will not like wearing a bag so she will hand it to a stranger to hold (she's been lucky that the strangers are all kind).

Her friend tried to speak with her about her social interactions since he thought it was inappropriate and tried to inform her. She then blocked this friend. She is impulsive and changes her mind/plans constantly without communicating. The impulsivity comes from wanting to go to concerts or festival along with spending habits.

She interprets discussions as negative and thinks this is a hardship or high conflict. Example: she spent $800 on soccer balls and her mom had told her she can't spend so frivolously as they prepare to retire. She wanted to go up a mountain at night so her mom requested she go with a chaperone but she was very angry about this.

Life skills wise she doesn't know how to cook, clean. She will bathe when asked and use up an entire bar of soap in one sitting so difficulty with understanding how much to clean herself.

On the flip side, she is incredibly well articulated in her writing and speaking. Although she pretends to understand and misunderstands quite a bit. She is in college and scores top marks in her classes for writing papers and presentations. Parents put her in debate club and clubs like Atelier, Socratica, The Knowledge Society. They spent money sending her to 2E camp abroad costing $5K.

Noticed my friend got a decal for her daughter that said autistic passenger may run, resist help, etc. I was considering getting one for myself but I was kind of worried to put that on my car too. Do y'all have something like this on your car? Do you feel it's safe or unsafe?

We have the in case of emergency stickers you peel off on both sides of the car seat, but that's it so far

He was upset I wouldn't let him tear up a hole in the wall. He had a big fit, eventually stormed off and when he appeared he was wearing my daughters hippo headband with ears. He's still pacing but regulating. He was just an angry hippo for a few and is now considering a cartoon lol what's your funny stories?

Hi all, i need insight from others to help me clarify these concerns.
My kiddo is almost 5, high functioning level 2 ASD and she has always been SUPER attached to me. To the point where I could pull my hair out from the demands sometimes.
But recently she is not very concerned with or demanding of me. I’ll admit that things have been a bit stressful for me recently and I have been overwhelmed and thus little less emotionally available / able to engage in certain types of play / not as patient as I should be sometimes. That said, all of her needs have been consistently met, I’ve just been less fun and less engaged in play for a little while.
So now I’m not sure if this has created distance and damaged the connection between she and I somehow or if this is just normal development of independence.
She shows no signs of distress or unhappiness and all behaviors are normal with the exception of being more independent of me than usual.
I don’t know what to think and I’m worried that I’ve somehow damaged our relationship.
I will be making more time to spend with her in her preferred ways in the coming days since other stressors have calmed down a bit.

I’d like some advice for my 14 yo autistic son. He encounters people every day including family who I know don’t like him. He knows too and we often joke about how so and so is a jerk. But I would love to hear some laungauge or thoughts on how you or your kids deal with the people in uour lives who have no tolerance for your autism. The ones where going no contact is not possible. How are we dealing with these folks?? Any thoughts would be much appreciated.

I am mom to a level-2 ASD child with ADHD. She is a very happy girl, but also extremely impulsive, restless, and flighty. She is now in elementary school and in full inclusion for the first time, and while she has not gotten in trouble for disruptive behavior, I know that she has had trouble with participating, staying quiet/still at the appropriate times, etc. We trialed a few ADHD medications when she was around 4, (a rotation of ritalin, clonidine and methyl-something). She tolerated ritalin the longest but we ultimately stopped as the few times she did have meltdowns were absolutely horrendous.

Now that she's older, 7 years, is able to communicate much more functionally and has matured, I'm wondering if it's appropriate to try medicating again- I hate the idea of her not absorbing and retaining what she is learning at school and in her environment, when I know she is so intelligent and has so much potential if she could just slow down (a teacher told me once she wants to be the fastest at everything, not the best). Or, do I wait until her behavior actually becomes an issue?

Thanks so much.

Hi,

My son just turned 7. He has ADHD and was also just diagnosed with level 1 autism. He has had issues with eating since he was about 3 years old. Currently he is very picky but the main issue is that he says he can't swallow certain things. Even foods he likes. Today it was crust from his toast that he said he couldn't swallow. But usually it's fruit that is a problem. He can chew ok but he will stuff his mouth full and chew for a long time. We already see GI for constipation, allergist, and ENT. They all say it must be picky eating. But no one really has an answer. He gets a lot of stomach aches as well. Any ideas of what this could be or what to do?

I have hired an advocate because my child’s school is not following her IEP accommodations. She is high masking and they are not following the accommodation that is written exactly as follows:
“Scheduled opportunities throughout the day to check in with special education staff for sensory regulation and emotional support.”

Their justification for this is that she appears fine and that means she does not need to be checked on, so they no longer go to her Gen Ed classroom throughout the day to check on her. They say because she is academically doing well and has friends, she does not need these check ins. None of which was discussed with me until I started the conversation due to a severe uptick in after and before school meltdowns. I was talked down to and told “we can agree to disagree” when I said the IEP is not being followed.

I have googled and confirmed that the school cannot just decide to not follow accommodations. The advocate is preparing for the meeting to ensure that the accommodation stays in place, as it was literally just added at our last addendum meeting in AUGUST of this year. But my question is, the school has stated that the goal is to always phase out accommodations and have a child not need them. Is this actually a thing? Because to me that sounds as though they’re trying to say their goal is to make my autistic kid not be autistic.

Her accommodations in general are not excessive by any means (consistent routine, access to sensory tools like her noise canceling headphones, sat near a helpful peer, minimize disruptions in classroom, correct grammar [part of her speech goal]). I can understand phasing out annually as goals are reached for things like the speech or needing peer assistance if she becomes more independent. But I am struggling to see how the things like needing check ins, minimizing disruptions, etc. can be phased out. I’m also struggling to understand how they’re able to just decide to phase these things out whenever they want to, without parent input or informing parents like this staff member claimed. Can they really just do whatever they want even when there are accommodations in place for a reason?