To ask how my ASD son will progress

[GemmaM0517]

I know nobody can really answer that, but just looking for stories of hope, I suppose. My little boy turns 5 next week and is under assessment for ASD (really just a formality at this point). He has been deferred for a year and will be starting primary school this August (we are in Scotland), hopefully at an ASD base attached to a mainstream school. Nursery are great and very supportive, he loves going there and wakes up asking for "pre-school" everyday! He is verbal but not conversational, he can request whatever he wants and has a large labelling vocabulary. He has recently started telling me he wants his pull up changed when it is dirty which I feel is a great step forward towards potty training, our next goal. He sings songs and adores pirates, Toy Story, dressing up, vikings! He is a good sleeper and an ok eater. He doesn't play with other kids, although will do rough and tumble with his big sis and asks for her to come back by calling her, "sister". ❤️ He vocal stims and is in his own world a lot. He can only currently follow basic commands and it is hard to tell what he does and doesn't understand. He is my world, and I long for the day when I can have a conversation with him. If anyone can share their experiences, that would be much appreciated. X

Anyone x

He will always be autistic, but will grow, change and surprise you everyday. I’m still waiting to hear my 6 year old speak. Your little boy sounds lovely and I wish all the best possible outcomes for him ❤️

@Ebjp39 thank you 😊 hope you get to hear your little boy speak very soon x

I can tell he’s going to be absolutely fine - he’s doing amazing so far! Keep up the amazing parenting as you’re clearly doing a fantastic job.

I have 2 daughters who are now young adults (well almost, 18 and 20), my eldest was diagnosed early, survived mainstream school, I say survived as she struggled socially but not academically. She’s now in her 2nd year at uni and living away from home (with some support). My other daughter was non verbal until 5, severe sensory issues and still struggles to hold a conversation at the age of almost 18, I can’t say it’s been easy because it hasn’t, she has progressed in some areas but not in others, she will never live independently.

It’s hard for anyone to know what the future holds for any child with autism, in some ways they may just be delayed in some areas but may catch up, there maybe times where they regress or they may do amazingly and end up leading a pretty independent life. I have spent years worrying about the future, wondering and wishing but none of it was ever in my hands, what will be will be.

He sounds very like my nephew. He started asn class in p1 in August. He has cane on leaps and bounds since his teaching staff are great.

He sounds like an amazing little boy and your love for him comes through so passionately in your post.
My little boy isn't much further along in his ASD journey (just turned 6). He was diagnosed at 2.5 and started school last year pretty much non-verbal and in nappies. A year later and he was fully toileted (recently out of pull-ups at nighttime too). He has lots of language and is starting to put words together. Once he found his words we realised that he knew all his numbers, colours, letters and can read some words by sight.
Development in children with ASD isn't linear and you may find that he jumps forward in a few weeks what would take a NT child a few months to do!
Most importantly he is so happy!! I try not to worry too much about what the future holds and instead live in the moment and take pleasure in every small step he makes. He is the heart and soul of our family and, like you, my absolute world.

Beautiful responses, thank you everyone 😊

Possibly not a helpful response but just to say my dc sounds very similar and your post really resonates. Wishing you and your DS all the best ❤️

My ds is 11 soon and was diagnosed at 2.4. He was non verbal and in nappies until 5 , these days people don't realise he's autistic although he's been in the same mainstream school since he was 2 who are fantastic. He's very bright, very articulate and one the head teacher award today which says he is one of the kindest people you could meet

When he was a toddler we thought he may never communicate or come out of nappies or go to ms school his presentation was so severe

My DD2 is autistic. She struggled through school, like another poster said it was the social side she struggled with. She is 16 and at 14 she changed to a studio school (art based). Her social skills have improved and for the first time she has real friends and even a boyfriend.
She still struggles a bit in larger groups but she has made amazing progress.
My 3 year old is probably autistic too as he is virtually non verbal and won't sir on the potty and has many sensory issues. He will have to go to school in September as nursery won't keep him past the summer when he's 4. I understand the worry and often feel sad that he'll miss out on things (he is perfectly happy though). The thing is your little boy, my little boy, every child is amazing and they all achieve things that amaze us.
I hope your little one gets on okay, it sounds like he's already doing really well.

My eldest son (18) was diagnosed when he was 7, I had suspected it for years but his primary school didn't want to 'label' him. As secondary teachers, my husband and I knew it would be important for him to get support. I remember when he was going through diagnosis, all I could do was worry about how he would be when older.
Our journey hasn't always been easy, but I can tell you we all adore him and his 'quirks'. We were really open with him about it, something he's always said he's grateful for.
There are lots of resources, books and websites that will help you navigate.
My son is doing an apprenticeship now, and I overheard his tutor yesterday, she told him 'you must make your parents very proud, you're such a wonderful young man' - she's bang on with that!
Take it one step at a time, all children, teens and adults are different, and no two children with autism are the same.

Sounds very similar to my DS at that age. His comprehension scores from his speech and language assessments were very low (about 15% if I remember rightly)
He's a young adult now and can have deep and meaningful conversations! He could by the time he was about 7, I'd say. When the mood takes him, he's an absolute chatter box and a really good conversationalist. He does still ask the same question, sometimes for weeks. I think that's about things he just can't get his head around and needs a bit more clarity.
Keep talking to your DS and remember he will always make progress. Nobody knows how fast or at what level, but he will keep progressing.

My eldest autistic son is a fifth year medical student. He was slow to talk but was only diagnosed around 10. He always had problems with handwriting - right profession maybe. He got a dispensation to do exams using a keyboard which helped a lot. We changed him out of a private school to a state school. He had to have some remedial coaching to catch up because for whatever reason his form teacher just set his teeth on edge and somehow showed a complete inability to teach maths to him. The private tutor couldn't understand what had happened because he found him incredibly easy to teach.

My youngest son has just completed a degree in an arts subject. He is job hunting and has just signed up for some volunteer work to have something to put on his cv. He really struggled academically - we tutored him heavily right through school and helped with revision etc through university. His degree isn't stellar but respectable. When he was 11, his teachers would have fallen about laughing if we'd mentioned university. They didn't think he'd get through high school! He was very late to talk and read. He also had ADHD and did use medication for classes in subjects he found tough like maths.

None of this was easy and we had some hellish times and awful meltdowns. My youngest was diagnosed as having global development delay. We actually found out he was largely deaf and we think he'd probably grown up lipreading. He fooled childcare workers, doctors and even a speech language teacher and us. Grommets restored his hearing and, strangely, according to the ENT specialist he was left with keener than normal hearing as an adult. He survived cancer as a teenager and was very brave about it all. (The doctors say that it is almost certain to be nothing more than an interesting footnote in his medical file as it was caught very very early through a flukish misdiagnosis of appendicitis.)

So with lots of support your children can surprise you.

Thank you everyone, it has been so helpful reading your experiences x

My ASD 22yr old son just came in from work which he drove too. At 5 when he started reception he was physically sick and soiled himself every day for the first 4 weeks due to the separation anxiety. He still has anxiety but he does well. It's been hard at times it's still hard at times. Who am I kidding it's been really hard but there have been just as many highs as lows and if someone told me at 5 we would be here today I wouldn't have believed it. Keep hoping and just take each day as it comes.

So amazing to hear about your son! Gives me lots of hope. My little boy said his first sentence today! ❤️ He pointed at the TV when I was putting his programme on for him and said "I want diggy hole!" (The name of his show). He usually uses single words to request, so this is massive for him 🥰

nobody can tell you. it also depends largely on the extent of his learning difficulties (sounds like there are some). DC was like that. Not much language at 4/5. now a teen. Fully verbal, we have conversations, doing great. They are at a special school and will need lifelong 24/7 support, unlikely to be ever independent but they have developed do much more than I ever thought possible.

I’ve changed name as this will put me to anyone who knows me. My son is now 19, when he heard that my friends son was being assessed for Autism he said ‘that’s cool’, he also said that it takes a while to take used to it but that once you understand it it gets much easier.