To ask how your ASD child had developed?

[Thehonestbadger]

I have a almost 3yo
Non verbal, just beginning to have an occasional word but lots of babbling.
He started talking normally then suddenly stopped altogether around 14/16mo

He does respond to some commands like ‘stop’ or ‘no’ if I really shout them and will now sometimes hand me items he’s holding if I ask for them or look at an item if I point to it.
He’s not reliable though and he doesn’t have great awareness of others needs (he will kick a hot coffee right out of my hand on the sofa or try and climb me whilst I’m holding his baby sister and hurt her).

He goes to nursery, he manages ok but doesn’t do the group activities and Isn’t interested in the other kids.

He doesn’t point or nod/shake his head, he doesn’t acknowledge anyone arriving/leaving or engage in tasks (like food shopping or chores even when made a game). He can’t follow simple instructions like ‘get your shoes’ he just doesn’t have a clue, I might as well be speaking mandarin.

If you have an ASD child also I would be so grateful to know how they developed as they grew. There’s no template and I know that, they’re all unique but I’d love to hear what life with older ASD kids is like so I can brace myself. I feel like I’m staring into the complete unknown.

My 18mo is neurotypical and I feel like I have such a better idea of what her future will look like.

That is interesting, that yours wouldn't tolerate being put down either. We also co-slept so we could get some sleep. Looking back there are other markers, but they were easily dismissed as personal quirks at the time.

Dd had no speech until between 3&4 when she picked up a handful of words. Around 4 she then developed full speed almost overnight, like something clicked. She could already read it turned out, we didn't realise because she couldn't talk!

She's extremely bright but has significant mental health challenges, currently at university

Dd was non verbal until 5 and has other diagnoses too.

Shes now thriving in a mainstream school, predicted to pass all her GCSEs. Happy, funny, hard working. Not very streetwise but on the flip side I dont worry about drugs etc...that some of her peers have got involved in.

Its been a benefit not a drawback all things considered.

Interested in this thread. My son is just like what autumn treacle describes. He is 3.9 years old. Very behind developmentally, but very cuddly and loves being twirled around and active play. Very speech delayed and obsessed with music and is sensory seeking. Not ASD diagnosis but very blatant under sensitive sensory issues and SL delay. I think he is going to need a lot of help at school, so hope he gets it.

@lifeinthehills
My asd dd as a baby was very very difficult, I had to basically carry her, demand feed and co sleep for 6 months without a break, she struggled to latch, failure to thrive ... it all made sense later but at the time i had a continuously screaming baby why slept 12 hours tops - her non asd sister was so different.

@Iamboredandgoingforatwix Always happy to chat if you ever want to! 😊

My little boy sounds very similar to yours. I try not to get fixated on speech but I really worry about this all of the time if I’m honest. My little boy has never said any words and he’s three early next year. He seems so bright to me but he’s behind massively in his milestones 😭. I love him so much - he’s everything I expected in an odd kind of way. I don’t think I’m good at always knowing what to do as a parent. I try my hardest and I always put him first. He’s always with me and his happiness is paramount but I look at other mothers and think I’m inadequate.

Just to add with people saying their DC couldn’t be put down as babies DD2 was a very happy, smiley baby and was happy to just sleep in her snuzpod next to me and then in her own cot, never had an issue in that respect, she was very content. She smiles less now though which makes me a little sad at times, though I know she is happy.

I also would say my son was a difficult baby too. First month was fine, then a nightmare which we thought was colic, and screamed on car journeys and woke frequently at night. Was also hard as a younger toddler too with tantrums. He is better now, but still has his moments if we are out and the journey isn't as expected. He is quite cheerful much of the time when things are good.

I referred to mine as 'high needs babies'. I had the time so it didn't bother me, I just went with the flow. My babies were very content - as long as they were in arms. I held them so they never cried. I'm not even sure if I know what a NT child is like!

he doesn’t have great awareness of others needs (he will kick a hot coffee right out of my hand on the sofa or try and climb me whilst I’m holding his baby sister and hurt her).

Or he is trying to communicate
Put baby down i am jealous
I want a drink
All behaviour is communication
Harness that

Communication is the biggest hurdle
How do you know what he wants? What he likes?
PECS might help
Visual clues
Autism specific nursery
find some one e g speech therapist who understands autism and will use all ways to support communication

Ds in his 20s still no speech but ises ipad speech app to type and speak his needs and wants at basic level . PECS training and ABA approach helped when little.

My son was diagnosed just as he turned 3. No one ever tells you the severity but he was as severely effected as he could be by his diagnosis. He would climb the walls trying to escape if people came into the house and tried to engage with him. He would run off and bolt at every chance. He would wind down the car windows and try to dive out while I drove. I threw a car seat at my head while I was driving. He regularly threw things out the window and at me while driving.

He went to a normal nursery and coped fine there but didn't interact with the other kids but he would follow their lead and sit when told etc.

He went to a severe learning difficulties nursery and then school. Dry during the day just before he turned five and non verbal at 7. I moved him to a speech and language school at 7 and within 3 months he started to tall. He has a severe range of language disorders. Just paid for a private EP report and he has a normal adverage IQ.

He can hold a conversation. He has just told me today "my god its so cold today I'm freezing" which made me smile as he can use turn of phrase nicely now. He has never had a meltdown. He has never needed routine to a noticeable extent
He runs his friends back and soothes them when they are upset. He has buckets of empathy. He has done things I thought he never would. He is learning to read and write with nearly all his dla going on tutors. He amazes me. He still can be very repetitive when he is anxious and still rolls on the gloom too much. But I'm cautiously optometrist that the little boy with very severe needs keeps learning every day.

It's been bloody hard. My heart breaks every day. Not easy at all but I'm not the kind of person who accepted "he will never talk" say that after I try everything. Only then will he never.

I'm pushed for time but I didn't want to read and run. I will just give you a brief run down of how my son was a couple of years ago and how he is doing now.
He has an autism diagnosis (was diagnosed age 3), an ehcp and is under SALT, dietician and complex needs nursing due to toileting difficulties.

2020 age 3

Non verbal, no spoken conversation atall
Used gestures and noises to communicate
Only had basic comprehension of spoken instructions
Only drank milk, ate snacks, no meals
Relentless meltdowns
Unable to socialise with children
Refused to play alongside children
Paced around the classroom not partaking in lessons
Wasn't able to understand sharing or working as a team in school
Developing at the level expected of a 1-1.5 year old
Using nappies day and night
Harming himself due to frustration or upset
It was suggested that we book tours for specialist provision

2022 age 5

Having full and clever conversations with adults and children. Speech needs some work but there are very few difficulties now with spoken communication
Fully understands and follows instructions
Food is still a a significant issue but he is open to slightly more food options
Meltdowns are few and far between but are often understandable in the circumstances when they do happen
Not only socialises but actually plays with children at school and contributes to deciding games they will play together
Will share resources and work/learn in a pair or small group in class
Developing at age 3-4 in terms of reading/maths/
/general learning and social skills
Still relies on nappies especially out of the house but is open to using a potty now
Doesn't hurt himself anymore when frustrated
Mainstream school are confident they can meet his needs.

In two years, with plenty of support and understanding, his progress is absolutely incredible.

My son is autistic but has barely stopped talking since he was 10m! He's now 9.

I just thought I'd suggest, in case it hasn't come up, that you have his hearing checked as this was one of the things we had to eliminate on the way to a diagnosis, as some of the inattentive behaviour you describe could be explained by hearing problems.

On the non verbal issue - I work with children with various special needs, all of whom have learning delays and about 25% of whom have autism diagnoses, and one twelve year old started speaking in phrases at 11 having been totally non verbal (not even pre verbal babbling) until not long before. His phrases aren't standard structures and have elements of echoing but they communicate his meaning and he assembles new sentences out of the building blocks he has to say quite a lot. His older brother however is still completely non verbal - he rarely makes any sound unless very distressed - but has good understanding and can follow two stage instructions.

Language development is often non standard but for non verbal preschool children it can certainly happen even seemingly very late.

It’s interesting reading about babies that we’re very clingy, DS was the same as a baby. He was quite a placid child and a happy baby, but he just wanted to be attached to me constantly, I used to joke that if he could have got back in the womb, he would have! We’d go to playgroups and he wouldn’t crawl around, he just wanted to be my limpet!

It’s really interesting reading about how differently children with ASD develop. DS was behind at all his HV checks (but never alarmingly so) and then didn’t speak properly until 2.5 and didn’t walk until 2 (we’ve now realised he’s hypermobile which is often in conjunction with ASD). It was only when he was 3.5 when the tantrums weren’t getting better and his speech became very lacking in intonation that we raised concerns. It was about this time last year that we had a meeting with his preschool to discuss a referral and I was SO upset.

My DS has come a long way, meltdowns are hugely decreased, he is thriving academically and is so much more confident than he used to be. Still some challenges in terms of his processing, hypermobility and socially. But I really didn’t think we’d be doing as well as we are this time last year!

Thank Autumn. Its difficult at the moment due to going out and all the younger children seeming more advanced. I try to avoid chatting to people when out as you have to explain why your child is behind. We both work FT, so i do blame myself to an extent, but he is settled in a nursery. He starts school next September and I'm very worried how it will go. I don't think he will settle, follow instructions or cope well. He likes to run about a lot when we are out. We are applying for an EHCP and have an upcoming paediatric assessment soon. The pandemic has meant it has taken a year and a half to get to this stage and they identified hearing issues which got corrected, so the emphasis was on sorting that first and seeing what changed.

I do think there is an intellectual impairment. He shows signs of problem solving and can count up to 10 and try to say some alphabet letters (although he cant get the sounds out properly), but he just seems very behind his peers. He is quite outgoing with adults and is very tactile, but is different with other children and less interested. When I hear other people's stories about their autistic children there are some things he does which doesn't quite fit.

Hi , I have two children with autism, my son struggled through primary , had a breakdown when he couldn’t cope at secondary, so he went to a mental health school, and is now thriving at a mainstream college. My daughter is a little more complicated. She was diagnosed with autism at two , and has attended special school since . She is completely verbal now , but has massive sensory issues , she is also two to four year learning delay.one thing I would warn you about, is some of the autism content on platforms like TikTok, I have seen some real venom aimed at parents, from some “ autism advocates “.

It is difficult, and it’s hard when people don’t ‘get it’ and just make the right sounds and brush over it. My own Gran said I was being dramatic and that she raised 4 (NT) kids so she knows how hard it is. My auntie set her straight as she has 2 ND boys with additional needs and I’ve not heard a peep since.
Sometimes it’s just nice to talk and not feel judged? You working FT hadn’t thought anything in, I work PT alongside studying and my DH FT and nothing we would have done different would have changed anything for DD2.

Push as much as you can to get that plan in place but stay on top of everything at school and push at every given opportunity, DD2 isn’t at school yet but everything that’s happened so far is because I’ve been insistent that something is amiss and she needs more support, and it’s working! She is getting there. She’s very bright and problem solves to get what she wants and though can only count to three (from what we can tell) we celebrate al the small things like her unzipping her shoes or finding her name at the nursery lunch table when they move it around on purpose.
She is also very outgoing with most adults but has no interest in children unless it’s her sister in which case she loves wrestling (again for sensory reasons) and they will tackle each other and jump off things onto the sofa.

Please don’t ever blame yourself, you’re doing an amazing job with the resources you have and I’m sure you DS loves you very much, just keep pushing for everything you can to help him and your family, if you don’t ask they certainly won’t give. x

Yes I’ve seen this too, there is also a lot of talk of ‘curing’ children with autism too through therapies and a gluten free diets. 🙄
It’s not a disease that can be cured, it’s their entire personalities, all these therapies are going to do is distress everyone further and waste time and money.
Just like all children they need love and support but just with some more adjustments and understanding that their world is viewed differently.

My DS is 19. He was diagnosed at 2. He was non verbal until he was about 10, then gradually started to speak. Now I can have a pretty good conversation with him. (If it’s about smurfs, toy story or food) He’s still very rigid with his routines but rarely has full on melt downs when he’s upset. He stims a lot, mainly pacing, bouncing and flapping his hands.
He’s a really lovely young man, great sense of humour and very caring. I’m very proud of him.

Thanks for your kind words. I've had a tricky few days with DS snd we are both feeling a but under the weather, but not properly ill IYSWIM.

I have struggled with it mentally today as we have been out and it is becoming very obvious to other parents that my son isn't like their kids. There are some wonderful ladies at our local library and one always come to chat to me about my son, bit I'm always conscious of him running about, which he does a lot of. He can open and shut doors a lot, which make it very obvious to other people. He wouldn't sit down and read like my other son did or show any interest in what I was doing and it hit me a bit that I felt quite sad about this.

I'm really worried about school and him struggling and getting excluded, or being placed in a special school but not being able to get wrap around care. I need to work full time, so it would be a huge hit financially to not very able to work full time.

I hope it works out for your daughter. It sounds like you are on the ball with getting her what she needs. Has she had her hearing assessed?