ASD signs and how your children are now?

[mumroom6571]

My little boy will be 3 in a few weeks. He gives some eye contact but not much, does not smile when being smiled at but does laugh at being tickled or thrown around. He says the alphabet all day long, tip toe walks, hand leads, jumps and spins, makes cute high pitched noises.
He's nowhere near ready for toilet training, does not follow commands apart from 'give me a kiss', prefers to play on his own, has to be walked with a stroller or reins and runs away in unsafe situations.
Anyone else's children sound similar at that age and how are they now?
The wait for a diagnosis is so long, and I'm looking for some hope.
I'm aware every child is different but I'm just curious. Thank you x

Hi @mumroom6571 my DS sounded exactly the same at his age. I found age 2-3 really tough as physically he was developing but behaviour wise he was like a 1 year old. The meltdowns, not being able to transition from one activity to another, everything seeming like a battle, vacant stares, no sleep, little interaction was heartbreaking, so I want you to know I know exactly what you’re going through.

DS is 4.5 and his nursery introduced pecs cards at age 3 due to his limited eye contact and he picked it up really quickly. He can say so many words, animals, instruments, numbers, shapes, colours etc and due to him being a gasgult language processor he will say lots of phrases like “down by the cool of the pool” “spin me round” “oh dear” “it’s funny/im happy”, but it may take him longer to develop his conversational vocabulary. Another thing I was taught is to try to avoid questions, and talk from his view point. So instead of saying “are you hungry?” Say “I’m hungry, let’s get a snack/make dinner” or when he wants tickles say “tickle my belly/leg/“ as you’re tickling him.

Toilet training wise is still a struggle, but we are persistent and look out for signs as well as having set times to pop him on the toilet. He’s dry through the night, most mornings he will wee on the toilet and sometimes he says “toilet time” throughout the day, other days he won’t. Have you looked at the ERIC website for tips on potting training?

Personally, I think being in a pram at three is quite normal, especially if it’s going to keep him safe. DS was in a pram until 4, it’s great that you’re using reigns, I would take DS to the park in his pram, take him out on the reigns and walk around for a bit and walk him back in the pram, slowly making the trip home in the pram shorter. I did this for months and months. I remember the first time we walked to the shops and back for a magazine and he held my hand the entire time (20 minutes all together), and when we got home I was so happy I cried!

I’ve just realised I’m almost writing an essay now haha! But to answer your question, DS has come on leaps and bounds in the last 18 months. Yes, he still maybe delayed in certain areas, but he is making so much progress, eye contact is wonderful, he interacts with us and is starting to play with his friends at nursery, he is a happy and affectionate little boy. He still enjoys playing by himself but he will sometimes engage in adult led activities.

Also, there are things I wish I did/knew sooner…Reach out to other parents whose children have SEN, they just get you and your journey and their advice/empathy is invaluable. That goes for people on this site, I’ve had some wonderful advice from parents on here. If your DS is in nursery then talk to the manager/SENCO about an EHCP, it’s been a battle but DS has one just in time for school in September. Ignore anyone who says “he should be doing X,Y,Z by now” you know your DS better than anyone else and if he’s needs to be in a pram until he is 4 as it keeps him safe then so be it. He will get there in his own time. There are lots of books to help you navigate SEN parenting, I found “the reason I jump” and “how to road a happy autistic child” really informative. Apply for DLA, I thought it was means tested but it’s not, it’s based on care needs. The extra money went towards private speech sessions (we had a two year waiting list!!) and my dwindling wages as DS is only in nursery for 15 hours a week as he needs a 1:1, so my career has taken a huge hit.

I honestly could write pages and pages so I hope this isn’t too overwhelming!

Hi! And thank you so much, I appreciate all the info ❤️

I know a diagnosis shouldn't be important, but I just wish someone could tell me if he has it? I don't know if you felt the same!

I've tried the visual routine boards, a communication book, and now and next boards. He is very visual but struggles with these for some reason.

I'm worried for the future. I must admit, he's a fantastic sleeper (touch wood).

He's really affectionate, loves cuddles. I don't know what I would do if he didn't because it's the only connection we have. He doesn't get any enjoyment out of joint attention, doesn't point to show me things, doesn't bring me things to enjoy with him. He's perfectly happy sat playing on his own but he does like me in the room with him, just not interacting with him!

He doesn't sit at the table when we have meals, so I feed him a bite at a time while he's on the go. He still puts things in his mouth and stuffs his mouth to the point of choking. Eats non edible items. Throws things (sometimes catching one of us in the face!), he doesn't mean to but when you tell him no and stop he doesn't understand.

He has a 4 year old sister who is desperate to play and interact with him but he's not interested.

Ugh, sorry for the rant! Thanks so much for your reply it was really helpful and gives me hope.

You’re welcome. Rant away, that’s what these threads are for.

Im exactly the same, not bothered about the diagnosis but I just want to know if my son has autism and/or ADHD so I know how to support and understand him in order for him to thrive.

You sound so proactive in your approach to your DS, all the tools you are using will help him. I’ve found that our little ones need a lot more time, practice and patience. Sometimes LOTS of patience.

Has your DD tried playing alongside him with a toy he likes? That may slowly engage him. It’s so tough isn’t it? It used to break my heart when DS’s cousins tried to play with him and he would give them a blank stare and continue with what he was doing. Now he goes up to them and says “ringa ringa posey?”. So although he isn’t playing like a NT child of his age, he is still making progress, as will your DS 💐

Hey my son is now 5 but was identical to this at the age of 3. He scripted all day long, started walking on his tip toes, not potty trained, span around in circles non stop at times, didn’t respond to his name, didn’t engage us with his play at all, honestly it was like he saw through us tbh.

Like I said he’s now 5 and the changes are amazing. He still isn’t potty trained but I do believe we will get there with him when he’s ready. He just went through a year of stool withholding and holding in his poos for up to 3 weeks!!! Now he will poop daily on the toilet. At 3 he still breastfed, he stopped at 3.5 something I never thought possible. He was still sleeping in our bed, now he sleeps in his own bed, all night in his own room.

I was terrified for him to start nursery but it did him absolute WONDERS! I never thought he would be able to stay there even for the 3 hours honestly. Now he’s in reception and does 8:45-1pm. Never thought he would be able to stay for lunch but he sits and eats with all the other children perfectly fine. At 3 (and up until he was 4.5) he would only eat at home in his high chair but now he’s totally fine sitting at the dining table or on the sofa.

At 3 he would stay in his coat and shoes all day long, he had no understanding they came off when you got home. Not only does he now understand but he also takes them off completely by himself. His understanding is so much better than when he was 3. Even simple things like ‘Pass mommy that off the floor’ he knows what I mean. He understands I’m mommy and daddy is daddy, even uses our names sometimes to get our attention. Uses simple phrases to get his needs/wants met. Some of it can still be guess work though and he still does a lot of hand leading.

He uses please and thank you, says what specific snack or toy he wants. Like I said it can still be guess work but oh my god at 3 he never said a single word to show what he wanted and used to have mind blowing meltdowns when you didn’t understand him. He now responds to his name I would say 80% of the time, he engages us in his play and likes us involved, had a huge phase of getting us to read him books and it was lovely after being ignored for so long.

At 3 he was still using his stroller but for the most part now he doesn’t, last summer we went to farm parks, days out etc with family and he walked around the whole time it was honestly amazing to see, really warmed my heart and again I never, ever thought we would get to that point. I really thought we would end up buying a disability pram for him because he used to refuse to walk anywhere at all, even from the front door to the car, it was a nightmare.

Things can still be difficult don’t get me wrong. We just went through 2-3 months of autistic burnout which was hard to see but we allowed him to work through it at his own pace and we didn’t push him. He still doesn’t understand some things, such as why he can’t go on his tablet when it dies and needs charging, but it’s not the end of the world. Honestly he is a completely different kid now to when he was 3 and I suspect he will be even more different when he’s 7.

Thank you so much to both of you for giving me some reassurance. It's so promising to hear that your little ones are able to express their needs to some extent and get some enjoyment from play with other people.

My son is still breastfed on a night too and hoping to stop soon!

I guess I need to readjust my expectations. Applied for DLA a while ago but heard nothing yet, using the money for private speech therapy sounds good thank you for the advice!

❤️❤️

Readjusting your expectations, but also giving yourself grace and compassion, the SEN journey isnt something we think about when having a child and there is so much to process as we adjust to our new life.

The DLA waiting times are 16- 20 weeks I think? I believe there are “DLA waiting time” threads on here too. Plus you can always give them a call for an update on the application.

💐💐

My DD was very similar to your son at 3 apart from the speech as she was and has remained non verbal. She's 5 now and is so much more interested in people being in her world and building connections in her own way. She's at school and does full days although her timetable is very different to other children's and even though she is still behind her NT peers, she is making amazing progress. The best way I can describe it to people is that their kids learning is a marathon where my DDs learning is more like climbing up Mt Everest.

I remember the wait for diagnosis though and I remember the horrible feelings of not knowing and 'what if its me causing this'. Be kind, look at the great things he can do and remember that you matter too. Self care is important!