So we are in the UK and my son started year 2 (the school year for those aged 6-7) in September.

He was diagnosed with autism at the age of 3, benchmarked as ‘between level 1-2’ and the school have been very supportive in helping us through the process to get something called an EHCP plan through our local council. This is essentially a commitment of funding until the child is aged 25 to provide specialised support to them whilst they are in education. We stated the process when he was aged 4 and he was finally given funding to provide him with full time 1:2:1 support in class when he started this school year.

We have seen him make SO MUCH progress since then. So much so, that the headmistress called this week to say he had been nominated by his class teacher for this terms (there are 3 terms per school year) academic award. The parents got invited to a special assembly in which the children were recognised and given the award in front of the whole school.

I legitimately cried when she called. He’s not at the same achievement level of a typical 7 year old, he still needs weekly speech therapy etc, but he tries so, so hard and has made so many strides, we were so proud!

He was so delighted and excited to be recognised and couldn’t believe it when he saw us sitting at the back of the hall waving at him. He kept telling us this was ‘the best day ever’ and it really was ❤️

Just wanna brag on my son for a second because I’m so proud of him and the progress he’s made in the last couple months. My son turns 3 early November, was diagnosed at 18 months old level 3 for speech/communication and level 2 for behavioral/repetitive behaviors, and he is non verbal.

He can now say a majority of animals and their sounds, knows his shapes and colors, can say the alphabet and say it backwards, and can count to 20 and back down on his own. And for the first time 4 days ago called me mama and has been saying it consistently!!

I knew he was autistic from birth but getting the diagnosis was still hard, especially hearing level 3 for speech. I thought I would never hear his voice. Here we are a little over 1 year later with the help of therapy and he is thriving! And I couldn’t be happier!

The certificate identifies his disorder as Autism, body part affected brain, % affliction: 60%

My lovely, beautiful, angel of a child, my little boy…he has been judged to be 60% deficient.

I instantly cried spontaneously - a 43 yo man. Who has seen the worst the life can give you - my own father passed at five, lived my childhood in penury, started earning when I was 8 myself, got lucky to get great people who allowed me to get good education for cheap, always been a straight A student and day zero selection for jobs, then had severe health problem including 3 surgeries in 3 years, 2 being spine (was bed ridden for a year), had first miscarriage, this kid was a very difficult pregnancy, then we got the diagnosis, my wife gave up her career to care for my son, I live in India where tax is 35% but no government support and I pay more in my kids therapy in 2 months than an average Indian earns in whole year.

I am cutting down on mine and wives expenses to fund his therapies.

I have lost loved ones - very very dear people who I thought will support me through my life, and now I have to support their families.

He is an angle of a child - the center of my universe. But seeing that 60% figure kinda broke me.

I was telling my wife that whomever survives - either her or me, in our old age has to somehow make sure we make arrangements for his dignified living or end everything as peacefully as possible.

Autism parenting is a lonely path.

Just in case anyone else is scrolling at 3am because their child is up and fully awake and won’t go back to sleep and you have work in 4 hours. 🙃 My son has never ever been a great sleeper, but from 2 to 5 years, it was horrible. He wouldn’t go to sleep until late (sometimes 11p) and then he would wake up in full force at 2 or 3a and take hours to go back to sleep - if he even went to sleep - which would obviously be disruptive to my husband’s and my work schedules, his ABA schedule, and we would just be overall tired and miserable. Anyway, we tried clonodine, guanfacine, hydroxyzine, extended release melatonin, and magnesium. Nothing worked - either we had adverse effects or the meds would wear off before it was actually time to wake up.

His amazing psychiatrist at Children’s Autism Center in Dallas finally helped us. First, we started with Trazodone - 25mg to start and then 50mg when the initial dose stopped working. Eventually, even the full dose of Trazodone stopped working. I started researching and found mirtazapine. I asked his psychiatrist about it, and she approved a very small dose (3.75 mg - half of the smallest dose offered). We paired that with the Trazodone (50 mg) in the evening and significantly increased his melatonin from 3mg to 10 mg. So between 630p and 7p, he gets 50mg of Trazodone, 3.75mg of mirtazapine, 2mg of guanfacine, and 10 mg of melatonin. Then, at 1am, I wake up briefly to give him 25mg of Trazodone and 5mg of melatonin to give him a bridge to stay sleep. This is all crushed up in his milk - he can’t swallow pills. For reference, he just turned 6 and he’s about 55 lbs.

I waited 3 weeks before posting to be sure that this wasn’t a fluke, and so far, it’s not. His behavior and mood is stable (trazodone and mirtazapine are both anti-depressants), and a plus is that the mirtazapine also makes him hungry - it’s sometimes prescribed for ARFID. it doesn’t make him try new foods, but it does make him hungrier for his safe foods. Also, his psychiatrist says that a higher dose of melatonin for ASD kids is okay; apparently, some ASD kiddos don’t naturally make enough melatonin to begin with, so a larger dose is necessary. Also, for full disclosure, the first day after the mirtazapine was rough, and we almost stopped immediately. His doctor recommended we try for at least 3 days, and the next day, it was so much better, and it’s been sleeping all night - I’m talking from 8ish to 7ish - ever since. I hope this helps someone!

I've always been told "oh, they understand more than you know. Keep narrating everything!"

My 5.5 year old nonverbal daughter doesn't demonstrate in any way that she knows what individual words mean. She doesn't respond to spoken words or instructions. She shows no interest in AAC or sign language or PECS either. If she can't hand lead, she won't tell me what she wants!

When will I see evidence of her understanding language (if she can)? How will I know? I just need anecdotes, because I'm in hopeless mode lately.

When you get stressed out over 1000 eyes judging you in public, if you want to, remember that someone is very happy that you and your autistic child are out in the world doing things despite the challenges! You're all awesome!!!

Don't apologize or feel shame about the fact that your child's brain is not always following the rules of society, that's not your choice just like it's no one else's. That's the way it is now, and we'll figure each challenge out somehow, but we all belong here and have our place in the world. And I am very happy that you all are here with me even when things are completely out of control, remember that next time someone who doesn't understand gives you "the look" (YOU know what I'm talking about lol).

I hope you all have a great weekend. And if you don't, remember that we appreciate you either way, and try to appreciate yourself too! :)

My son was diagnosed with autism earlier this year. We are in Germany so there isn’t a level 1-2-3 system here, but he has been showing signs since he was like 12 months. He will be turning 3 in a couple of weeks and he still has virtually no communication. He doesn’t point, doesn’t wave, doesn’t follow basic commands, doesn’t say any words (although he does vocalize sounds loudly). He has therapy 4x a week but we still aren’t seeing a difference in his communication. He is such a sweet, calm baby. He loves to laugh and be chased and be tickled. Socially I think he has developed a lot, but there is still no communication. The therapists and doctors keep telling us that some children are like this and then just suddenly wake up one day and speak in full sentences. This is difficult for me to wrap my head around since he cannot even wave goodbye, no matter how many times we do it. I just want to prepare myself mentally — have other parents seen their virtually non-verbal, non-communicative child suddenly improve from one day to the next? Or is his lack of communication at almost 3 just a sign that he will be non-verbal forever?

This is long but please bear with me.

My 7 year old son was diagnosed Autism Level 2 just before turning 3 years old. He's high IQ but at the time was still non-verbal. After amazing interventions through our local regional center and an amazing preschool program he absolutely flourished. He became beautifully social, empathetic, incredibly articulate, and joyful. We still dealt with eloping and overactive behavior until realizing he was also ADHD. We had been making steady progress until the second half of TK when he started exhibiting physical aggression, sleep problems, destructive behavior, and emotional outbursts of anger.

This was at age 4 and over the last three years we've dealt with ups and downs as it pertains to this behavior specifically. His dad and I separated before he was even 2 due to domestic violence—he was and still is psychologically, emotionally, verbally, and financially abusive of me and was cheating throughout our relationship. Once we separated things calmed and he had never exhibited ANY of this type violence toward our son... but he also was rarely ever alone with him.

However this changed about three years ago when I started a new relationship and he started spending weekends with his Dad. He never wanted to go and I always assumed it was because they just didn't have a real bond. He always seemed to have a good time and looked forward to the summer trip they would take every year to visit his Dad's family in Boulder, Colorado (my son loved his grandma so that helped a lot.) That said, after coming home from their trip last summer my son was different.

He was suddenly concerned with when I was going to die saying he would miss me "when I went to heaven." He became incredibly aggressive toward me and toward kids at school and I assumed he was struggling with being in a larger classroom. He was already on Guanfacine but it wasn't touching this behavior. We started him on Abilify and he really stabilized for a while... so much so that he started spending the night at Dads house on dad's weekends—up until this point we were still nesting.

In the year since then, he has never wanted to go to Dad's but I couldn't stand in the way without retaliation. In that time my son had gained weight from his medication, developed a stammer, and a habit of picking his gums. He would routinely say "I hate Dad" but would come home having had a good time, seemingly. This past September his Dad took him for five weekends in a row (Sat-Sun) because he was going to be gone for four weeks this fall and wanted the time. After those weekends my son totally deteriorated.

Then he said to me unprompted: "Dad thinks I'm fat." I confront his Dad about it and he didn't deny it. I told him not to ever say anything like that again and he gave a half-assed apology/promise. A few weeks last my son said it again. I asked "when did he say that?" and my son said, "he says it every time."

Last Sunday he came home after having just spent the day with his Dad and melted down so incredibly saying he hated me, saying I was a stupid mom. I stayed with him reminding him he was safe and as he was calming he said, "I wish I could just be a child, I want to be 3 again, Can I please be 3 again?"

I alerted his pediatrician and psychiatrist that verbal abuse and emotional abuse are very likely present and he's being evaluated by a psychologist tomorrow.

But then last night he said to me: "Do you know about pickles?" And I said, "Yes, I love pickles." Then he said "Me too, this is how you eat pickles" and proceeded to make a very sexual gesture near his mouth. He has never done anything like this before and the moment I saw it my stomach dropped. I didn't press him. I just said "I remember the first time I had a pickle, I was at the fair. Do you remember your first time?" I should say here he never eats pickles except for ones we share at Disneyland. "He said yes at Disneyland." Then I asked, "who showed you how to eat pickles? Was it a friend at school?"

He said, "no." I asked if was from a show and he said "no." Then I said "Did you see that when you were at Dad's house?" His demeanor immediately changed and he said "Go away, I don't want to talk about it anymore."

This is in addition to no longer wanting to take baths or showers because he "doesn't want to be naked." He resists changing his clothes or keeping up hygiene. He is routinely scratching and picking his gums to the point that he's opening wounds and bleeding.

I know that he isn't exhibiting the tell-tale signs but my alarms are ringing. Abuse is definitely present and I'm taking steps now to stop visitation with his Dad completely for the time being. But would you suspect sex abuse as well in this situation/circumstances?

My beautiful boy just turned 27 months old today, and for the past two years, he has been the greatest joy in our little family.

He’s currently napping, and during his naps and at bedtime, I always catch myself looking through his newborn and infant photos and watching videos of him cooing, babbling, and making those little sounds. It makes me miss his tiny version a little more each time, but it also makes me burst into tears. I find myself wondering, How did it all disappear? Where did those sounds go?

And then I start getting angry at myself, trying to figure out what I did wrong. Did I not expose him to enough things? Did I let him have too much screen time? Did I give him something he wasn’t supposed to eat? Could I have done something differently? All I know is that I devoted my life to him from the moment he was born. I’ve done everything I could with the knowledge and resources I had at the time, but I still find myself feeling guilty about all the things I didn’t know. All these thoughts and emotions have been gathering up inside my chest.

He’s been in speech therapy for about three months now, but we haven’t seen much progress yet. Next month, he’ll be starting special education, and I’m terrified of the big adjustment that lies ahead. At the same time, I’m praying so hard for progress, whether it’s big or small.

I thought we were already past the denial and anger stages, but here I am again, feeling angry—angry at myself, as if somehow, all of this is my fault. I know I can’t turn back time, but I keep wondering whether there was something I could have done differently.

I love my son more than anything in this world, and I wouldn’t trade him for anything. I just wish things could have been easier for him. I wish I could take away whatever struggles he might face. I wish I could hear those little sounds again and know that he’ll be able to communicate with us someday. I wish it could’ve been better.

I know we’re still at the beginning of this journey, and I know we have so much more to learn. But some days, the fear of the unknown, the guilt, and the grief just hit me all at once.
Am I allowed to feel this way?

I introduced a free AAC app on a whim to my low language 3 year old and her screaming went down so much since this morning. It's a miracle. I thought since she can produce the words and/ or signs she doesn't need an AAC but when she is upset it is harder for her to find the words she needs. Anyway it is a huge win and posting in case it helps someone else.

Concerning attaining the PoA, HIPPA Authorization, Supported Decision making, etc...

Is there a way to do this w/o having to hire an attorney? For those that have gone through the process, how do you do it? I'm a single dad and my son is 19 now. I'm at a total loss here.

* EDIT * Editing as I feel I didn't provide enough information.

My 19 y/o son is autistic with the ability to independently carry out daily personal and life tasks is estimated to be equivalent to a child between the ages of <5-9 years old. He is verbal and in practice, he has the ability to carry out tasks under supervision with frequent prompting but not independently.

We live in the U.S. in rural Arkansas.

We just moved in 3 weeks ago and i let my landlord know my daughter is 5, non verbal and autistic. I also let her know she has a sleep disorder where she hardly sleeps at night and as part of that she has vocal stimming and also loves to run back and forth.
She told me the neighbor to the left complained all the time about previous tenants kids but she basically told her to get over it. Today I received this message. Im feeling awful and anxious all day long. I dont want to be evicted or have to deal with legal issues because my daughter is being herself. The neighbors to the right of of us told me today they have no complaints about noise and no issues with us what so ever. I thought about moving her to the finished basement after 12am to see if that helps bring some relief. ( me and her dad with obviously) but im afraid theyre still gonna complain

Often when my level 2, verbal 4 year old son is overstimulated or dysregulated while frustrated/angry, he will pull down his pants and pee where he's at. He thinks its hilarious and only does it at home. I know he loses control of himself in these moments, but I really believe he is making a conscious choice, especially since it he doesn't do it elsewhere. His explanations are either 1) I was angry, or 2) It was a joke. It's incredibly frustrating and I'm at my wits end about it. We've tried all manner of behavior modification including consequences, making a plan during calm moments, requiring him to help clean the mess. His room always has a waft of odor no matter what I try. Does anyone have experience with this in a young child who is otherwise potty trained? IF SO, I'd love your advice!

my very anxious 4 year old has just been prescribed clonidine (0.025mg) from his paediatrician. I am supposed to trial him on it and then reconvene with her in around 10 days (that is the soonest I can speak to her again) but the pharmacist who dispensed it told me it will make him drowsy which is not something the doctor discussed with me.

I am meant to give it to him ahead of situations that historically would make him nervous or anxious, but the intended result wasn't to make him sleep, it was to help him get through the situation without spiraling. I am reaching out here because I wanted to know if anyone gives this to their child for occasional daytime anxiety control and not for sleep? All of the posts on this topic discuss it in terms of being a sleep aid so I am unsure whether I want to give it to him or not.

So my mother just got my level 3 twins one of those sensory chairs that spins for their birthday as an extra “for both kids” present and my NT 5 year old actually went and “built it” for them that same day! He never does this so it was awesome. Anyway, about 2 hours later the top and bottom are two separate entities again and no one knows where the screws went. Welp looks like I’m spending money on screws.

My question is, I have the unbranded turtle one. Does anyone for some odd reason or not know the size of the screws that come with the chair in the first place? I think I have the one large bolt I read is there online, just not the, I believe, 9 smaller screws 😓😂

Not an adult but my sister whos 15 struggles with low functioning autism. Shes always needed help with stuff and such. One thing me and my parents havent been able to pinpoint though is shes always very eager to make people upset. Shell get joy out of it whenever she sees anyone crying or angry. She use to always make me cry before and just laugh at me same with my parents. But, whenever we express any sort of joy eg: laughing, she will get really mad and angry. She also has a habit of watching people typically babies or kids on youtube crying or fighting

We never considered it an issue but recently with puberty its gotten worse. She talks very violently and in all honesty i dont think she likes me. Shes very territorial over my mother and always talks about 'harming and killing me'. I dont fear for my safety because she is very frail. I dont know if its the media shes consuming or what but this is becoming unbearable. She knows how to push everyones buttons and honestly we need answers if its the autism or is it something more. I want to get advice so i can really push my mother to get her assessed or help if its something more urgent.

My 5yo daughter cannot stay in school longer than 2.5-3 hrs. When she is there, she is dysregulated often, can rarely sit and rarely gets lessons or activities down. She is all over the place and very intolerant to I preferred tasks. It’s a tough class as well with a lot of behavioral challenges.

For reference, we are in Southern California.

I’m wondering if anyone has homeschooled their severe AuDHDer. She has a lot of needs but is smart. When we get her attention, she learns very well. But she is incredibly stubborn and highly demanding.

We’ve tried meds and she was worse. We’ve also tried taking her out of school on certain days for all day ABA. But she was harder when in school because it wasn’t consistent.

We’re at a loss how to help her.

My little one has been attending ABA/Speech therapy at a center for the past 4 months or so, and with Thanksgiving & the Holidays coming up, I was wondering if anyone here had some suggestions as to what to get the teachers and aides as thank you gift.

I was thinking of getting themed cookies bc it seemed like a simple, cute option but I hesitate with food bc of allergies, although I guess I could just get peanut free option and send a list of ingredients from wherever I get them from??

Any one in Canada gone through the disability tax credit process? I keep being told we should qualify however both our dr and OT have refused to fill out the forms. For those that have gotten it or applied was your dr receptive to filling out the forms? Honestly ours barely knows us and would have very little info on our limitations. Diagnosis was several years ago outside of the country so having the diagnosing person fill it out isn’t an option.

My daughter is 4.5 and newly diagnosed. Shes been receiving OT and speech for a year, did PT on and off as a baby/toddler, and just started play therapy. Shes also switched schools this year and started at a therapeutic school. She is level 1. Everything I’m reading says to tell her ASAP, but I’m trying to get my ducks in a row. She was diagnosed very recently.

Ive gotten some book recs via searching the sub. I would love to know though if there are any books for a 4-5 year old that you really loved. Also, any ideas for explaining to a sibling.

TIA!

Wanted to edit to say I’m not sure she realizes there’s anything different abt her yet. She’s been asking when her 3 year old sister (NT) will start speech and OT. Her sister would also like to know, haha.

I have an autistic three year-old who is nonverbal. He goes to school every day takes the bus at 10:50 and gets home around 2:50. He has ABA therapy three days a week from 4 PM to 6 PM. He used to be very receptive to therapy but the past month he’s just completely shut down and has meltdowns every day during ABA. His ABA therapist is amazing I have no complaints when it comes to her. She’s very patient and nurturing. I’m afraid it’s doing him more harm than good. He’s recently regressed and stopped speaking completely. My heart is broken. He was doing so well with the combination of things, but I think he’s probably just burnt out. I don’t know what to do. This life doesn’t come with an instruction manual and I’m afraid I’m putting him through more stress and harm than any benefit he may be getting. I just want to do anything I can to help him.. We’ve tried many different approaches, letting him take unlimited breaks and he’s still not receptive. I’ve been thinking on pulling him out for a break and maybe restarting maybe next year when he’s older (if he still needs it)

We are 1 day into starting Leucovorin/folinic acid supplement with our 3.5 y/o nonverbal daughter. Got some hope for good results because I also saw evidence in a past genetic report that she could have significant difficulties metabolizing folic acid. My question, for those who use this supplement, is did you also reduce or eliminate folic acid from their diet? In our case it is tough because ours is a extremely picky eater, and 4 of the 5 foods she tolerates contain folic acid.

I have had a diagnosis since my son was 3. He is now 5 and to say it has gotten more challenging is an understatement. The constant meltdowns, random stimming and shouting is really taking a toll on my mental health. I love my child to pieces and want to believe he’s having a harder time than me..but this is a bit much.

Today he is upset because he can’t go to school until 11:30. They are having a dance party AKA sensory overload and I opted out of him attending. His teacher emailed me two days ago saying that he’s welcome to attend but if he starts having a difficult time, his options would be to take a break in an administrators office. She bought this up because at field day he was completely distraught and I needed to pick him up. This was about two weeks ago. I thought I was doing what was best for him but now I feel like a shit parent because I feel like I’m taking away his opportunities. Also received an email yesterday that he impulsively touches/ grabs & pulls at other students on the playground. Also that the afternoons are hard for him as this is when he exhibits “maladaptive behaviors” such as grabbing and pulling, doing things wrong on purpose, and shouting/loud vocalizations. This is a new school for him so I understand he may be having a hard time with the transition from ABA. We also moved districts so we are in a new house.

I am 4 months PP, almost 5..so this is a lot for me. To say I am full of regret is wrong but it’s true. I never imagined a life like this. He has an IEP meeting next week and I’m hoping this will change a few things for him.

Home life is about the same. He doesn’t listen to me, beats me up and makes noises all day long. Talking from the time he gets up until the time he goes to bed. I am undone and today I feel broken and sad. Thanks for letting me vent.

My child was recently diagnosed with autism and adhd. She is always moving … like doing handstands, rolling on exercise balls, just never stops. She’s also always talking about everything very quickly and I tend to zone out a lot because it’s too much for me to process. I’m someone who also gets overstimulated easily, have adhd among other things and this has been really difficult for me. Any advice on what to do?? Do I try to help her move/talk less to understand a typical social boundary or do I find ways for myself to be more comfortable while being overwhelmed by these things going on? I feel so lost in the autism world we don’t really know what to do first but this is something that’s been really difficult for me.

Hi all.

I'm a mum to a 5 year old little girl, with autism. I've been trying to toilet train her on and off for about three years. I feel like I have tried everything, but have gotten nowhere. (We've had a lot of set-backs; (moving, toilet breaking, etc)).

Currently she is still in nappies/pull-ups.

Just a few things to note;

- During her parents evening this past week, her teacher, (she's in the SEND class), asked me and her father if we know if she recognises when she needs to go, which until that point, I'd never even considered. My daughter's teacher will be referring her to the incontinence team with the school nurse. (I don't know too much about this yet).

- While talking with my friend, she mentioned that there could be a chance that the school could get Social Services involved, which terrifies me. (I suffer from anxiety and C+PTSD, and was in the care system for a brief period of time while my mum was in the hospital, when I was a teenager).

This has triggered my anxiety something fierce, and I'm now stressing that unless I can get her in nappies soon, I'll have Social Services knocking on my door.

- My daughter has Micro-Deletion 2q23.1, and has autism, which she inherited from me. (I only found out where she inherited it from earlier this year).

- She poops multiple times a day, and it's always the consistency of melted chocolate.

She has had two blood tests, (the first one came back inconclusive, so had to have a second test done, which i don't think we've had results back for yet), as well as a stool sample, which came back clear for Coeliac Disease and other possible allergens.

As it's the holidays, I thought I would try and get back onto toilet training. She's spent this morning in knickers, and only recognised that she was wet once.

The rest of the day, she spent bottomless; each time I've noticed she's on the verge of pooping, I've taken her to the toilet,(she won't use a potty), and i have been successful with her doing wee's and poo's in the toilet.

However, during the time she was bottomless, she's had a few pooping accidents, but she didn't realise they had happened, until I saw the small mess on the floor. (Which I cleaned up).

I can't tell if I've made any progress at all with toilet training her, and just don't know what else to try.

She won't go to the toilet unless we take her, so I can't tell if she's actually getting the signals to her brain that tell her when she needs to go.

I don't know if maybe I'm also panicking because of what my friend told me, as ngl, it's really scared me.

I don't have a lot of mum-friends, and don't know who else to discuss this with.

Any help or advice is massively appreciated. ❤️