Please or to access all these features

Add post

Watch this thread

Save thread

Start a new thread

Flip thread

Hide thread

My feed

Active Unanswered threads

Getting started FAQ's

Unanswered threads Acronyms Talk guidelines

Hide shortcut buttons

Talk

AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Flip

1 2

Original poster

Would love to hear ASD progression stories

41 replies

SatisfyMySoul19 · 29/10/2021 21:24

Hi everyone .. I have a lovely boy, 2.9yo, who is speech and language delayed and showing signs of ASD. I've had my suspensions for just under a year, and in that time my son HAS made lots of progress. I would like to list his positives as I hate talking negatively about him .. He has gone from no communication to getting his needs met by taking me to what he wants or pointing (I was made up about the pointing, as his lack of pointing was the first red flag I noticed)! His receptive language has really improved! He literally understood nothing, he now understands, NO! Come back, give that to Mummy, go to the bath, brush your teeth, go to bed, time to leave, get in your pushchair, etc. He copies some nursery rhyme actions (when he feels like it 😉) such as If You're Happy And You Know It. He clapped his hands, span around and stomped his feet on command earlier which I thought was really cool. 😊 He's also started to repeat some words (again, when he feels like it 😉) such as down, go, tree. Let me tell you, the day I hear the word Mummy, will be the happiest day of my life .. He has no motor skills problems, he loves toys and has some imaginative play with his ice cream cart. He will walk to the shops with me holding my hand. He's a brilliant sleeper. HOWEVER, today has been terrible 😁 we went to the woods and he was wearing new wellies which were "wrong". I think a mix between sensory issues and not being the same as his old ones. We got home and he was trying to get me to do something with his toy .. I couldn't figure out what he wanted, huge tantrum. I feel for him so much as he's starting to get V frustrated due to the speech delay .. It was just one of those days where one thing after another goes wrong. I had to take myself off to my room to have a cry 😢 I try not to but I worry about his future. It's the not knowing how they will progress, although, I like to remind myself, he HAS already progressed loads. So, I would LOVE to hear your ASD progression stories to cheer me up a bit :) especially if you once had a jumping, crazy, lovely little whirlwind like mine!
Thanks ❤

OP posts:

Crazycatlady83 · 30/10/2021 10:33

Hi OP, my DS was diagnosed at 2.11 months and was very similar by the sounds of your DS. He would take us to places to have his needs met, had absolutely no language but did have some understanding.

We got some great support (speech and language, OT, a child development specialist, paediatrician etc) and started to makaton with him (hand over hand to begin with, he started to makaton back after 4 days) His speech developed from there and he said his first words at 3.6 years. He said mummy when we were on holiday (now that destination is my absolute favourite place on earth!)

He was potty trained at about 3.9 months and got it within 3 days.

He is 6 now and completely amazing! His speech is great (he struggles with some new concepts and doesn't get sarcasm) Struggles with processing speed but is in mainstream school with a 1-2-1. Has a lovely little group of 4 friends. Accesses mainstream out of school activities (swimming and beavers) and some special needs groups (gym and horse riding)

Good luck Op, i hope it gets easier soon for you and your lovely DS!

meltingappointment · 30/10/2021 10:34

I'm still as AUTISTIC

CoffeeWithCheese · 30/10/2021 11:00

DD2 is 8, diagnosed with ASD, also with dyspraxia and she had a "significant speech defect" when younger - she had basically minimal intelligible speech at the point she started Reception (she has verbal dyspraxia along with general dyspraxia).

I'll be honest - she struggled socially to get into a group of friends, but this was predominantly because we ended up unluckily in a cohort where the mums were fucking nasty and egged the kids on to isolate the kids that they took a dislike to their mothers. We've moved her school recently and she's fitted right in, made a load of friends - the mixed age classes have really suited her as she can mother and organise the kids slightly younger than her and it's boosted her confidence no end. When she's had a teacher who has understood her - she has absolutely flown in those school years (damn Covid cutting short her wonderful year 2 teacher) - we've had a couple of years where the teacher has refused to see a problem as she's so desperate to please and follow rules and do the right thing that she's a dream kid in class - placid, compliant, will smile when upset as she wants to make adults happy... but it all feeds into anxiety that comes out at home.

She's very sensory-seeking - I have to warn new teachers that if they wear any fluffy jumpers she WILL be there rubbing her face up against them like a cat! She twirls, dances (with dyspraxic spatial awareness - I now have no ornaments left!), squirms, will be found upside down, likes being squashed... but a side effect of this is that she's still a cuddle when her sister is at the age of parents just being a source of utter embarrassment and to be avoided at all times... so I still get hugged to death by my little fingerling!

I'm now waiting for an assessment myself as I've got a very strong inkling I'm Autistic as well - I've functioned so far well enough in life... never had a stellar career as I've never fitted into any job socially... anxious as hell, terrified of being called out for not following the rules (that's made Covid fucking fun), sensory overloads and periods in my life where I have crashed massively and spent weeks lying in a dark room which I now think fit the pattern of Autistic burnouts. I don't quite dare claim the definition of Autistic for me yet because I'm waiting for this appointment and scared of being jumped on because if that - but yeah... Would life be easier if I wasn't this way? Definitely - but it wouldn't be ME having that life.

Original poster

SatisfyMySoul19 · 30/10/2021 13:00

Thank you so much everyone for all your amazing responses! No, my son doesn't have an official diagnosis as he is still V young :) but every day he shows me what he is capable of and how unique and amazing he really is. I have high hopes for my little boy :)

OP posts:

meltingappointment · 30/10/2021 13:08

The reason is asked if he was actually diagnosed is because the progression you say may be a result of him not being autistic.

Original poster

SatisfyMySoul19 · 30/10/2021 14:05

@meltingappointment

The reason is asked if he was actually diagnosed is because the progression you say may be a result of him not being autistic.

It's a possibility of course! :-)

OP posts:

Original poster

SatisfyMySoul19 · 01/11/2021 20:55

@Crazycatlady83

Hi OP, my DS was diagnosed at 2.11 months and was very similar by the sounds of your DS. He would take us to places to have his needs met, had absolutely no language but did have some understanding.

He was potty trained at about 3.9 months and got it within 3 days.

Good luck Op, i hope it gets easier soon for you and your lovely DS!

Thank you so much for your response! It's great to read, especially as my little boy sounds similar to yours at that age! :) I'm also interested in Makaton and also PECS .. Trying to decide between the two :-) I've also ordered the Hanen More Than Words Book and am looking forward to getting stuck in to working with him at home :-) although, I feel he has made fab progress recently! Over the past few days his receptive has improved a little more, now understands a few more simple things like "let's go to the park", "go down the slide" etc :-) and before bed tonight was imitating the scenes on Peppa Pig and feeding his teddies toy ice creams. My heart feels like it could burst ❤

OP posts:

Stefanny · 02/10/2022 00:34

You have just described my child who is the same age as yours was when you wrote this post. Wondering how you are both doing, ive read your message and it's so relatable for me, felt like I could have written it myself. I too Amin desperate need of positive progression stories 💖 hope all is going well, onwards and upwards

NC6092 · 04/10/2022 11:46

Stefanny · 02/10/2022 00:34

Hi! :-) I am the original poster with a different name. My son is 3.9 now and doing well. He's in nursery which he really enjoys and has extra support there too. I am hoping to hold him back from starting school for an extra year. My son now has hundreds of words, although he mostly uses them for labelling, although is starting to communicate with language. :-) He also has lots of learnt phrases from TV, although he does apply them in the right context, for ex "I'm so hungry" etc. He's still miles behind but making progress all the time. He still doesn't really interact with children at nursery but plays with his sister well. Has some sensory issues but mostly a happy lad which is all I can ask for. Sleeps well! Still undiagnosed and waiting on SALT

NC6092 · 04/10/2022 11:51

Oh, and best of all. He now says Mummy 😍

BlackeyedSusan · 04/10/2022 12:04

He will be what he will be. Which is bloody unhelpful right now. But it is so variable. He will always have some difficulties but that does not mean he can't find his niche and work and enjoy life. Its likely to be different to a NT life but allowing him/himself to live a ND lifestyle will be better than trying to fit into a NT lifestyle badly.

BlackeyedSusan · 04/10/2022 12:07

(ps maybe enjoy the quiet? The sensory overload of the special interest monologues was tough but not as the bad as the swearing meltdowns)

safefirst · 04/10/2022 12:59

I have an amazing 6 year old ds who is autistic, my ds has learning disabilities and is non verbal as well.
He has learnt to count recently, he can put the numbers 1-10 in order and point to a number if you say for example where is 6, honestly anyone would have thought I'd won the lottery the first time he done this I've never been so happy and so proud of how amazing he actually is.
I used to worry about him never speaking etc but now we take each day as it comes and celebrate everything he achieves, he is such a happy soul and he makes us laugh every day.
He communicates in his own way, hand leading, pointing and PECS, we have tried signing and he's not interested I think he thinks I'm trying out some strange dance move🤣
I also have a 3 year old ds that is very similar to your little boy op, he is speech delayed but does say some words only a handful, he may well be autistic but he has just started preschool so we are waiting to see what they think as well before asking for a referral, but he is just the happiest little boy ever, he loves life.

Stefanny · 04/10/2022 13:37

Aaah best feeling ever I bet, mine has recently said mamma to get my attention, twice it has happened, and I can't explain how over the moon I was... it's not consistent though but little by little. Glad to hear your little one is doing well :) xx

Misslaw09 · 12/04/2023 09:13

Hi,I’d love to know how your ds is getting on now? my son is 3 in 2 months and only saying a few words. I love your positivity

Stefanny · 12/04/2023 17:37

Hi, my son is quite similar to what this user described so hope my experience also helps. My son was saying barely anything before his 3rd birthday (nov ‘22) and now he is actually saying mammy, daddy, go downstairs, milk, biscuits, water, hot, be careful, car-swings (let’s go in the car to the swings), knows numbers, alphabets and loads of vocab and beginning to show understanding of a few simple instructions, so like if I was getting him changed to take him somewhere nice like the park or the beach, chances are a few month back he wouldn’t cooperate because he didn’t understand where he was going or anything that I said, I was at my wits end (I remember crying in response to a friend’s question last summer, “so what does he say when he wants your attention, so if he’s like in his cot for instance and he wants to be out or let u know he’s awake?” Was the question, to which I replied “he just squeals” as I broke down at the thought that I hadn’t managed to even get him to say mammy). I have since seen SO much progress, it’s like he makes progress in spurts, so like he goes from nothing to a big sudden change, for instance his first words were numbers 1-20, he literally went from not a word to counting to 20 one day out of nowhere, I thought I was imagining things when I heard him! Same with the alphabet, then the gruffalo (recited the story!)… but still there was no communication or understanding there which kept me on edge and anxious. But as I say, that was kind of his first steps, now eventually we are getting there and he is starting to use words to actually achieve things rather than drag me to what he needs, and starting to understand Instructions etc which has had a huge impact on behaviour (of course, when you understand that your mammy is getting you ready to go to the park then you would cooperate to get ready! Lol I can now somewhat negotiate with him as he understands what I’m saying). I know it’s easier said than done, but try not to worry too much. I was at my lowest, darkest place last year over my son, worried sick, I can’t even tell u to what extent… and HE IS now coming on and making big progress, not developing in a “typical” way, yes, yet developing in his own way and making progress. He is still in nappies, has lots of sensory issues (this improving too thanks to improved communication), his attention is very very poor (which obviously also affects learning) BUT making lots of progress. Every child is different, we have neurotypical kids in reception (I’m a school teacher) that are quite poor vocabulary wise, some with just a few words and not putting sentences together (more often boys) so for your child to have some words at that age I’d say is a great sign👌 best wishes x

Flip

1 2