Struggling to accept DS 3.5 is likely autistic

[okroger]

Posting here as it’s quiet on the neurodiverse page.

I’ve posted here before but I guess I’m just looking for further reassurance (although still realistic).

I have two older DC 9 and 10 with no ND but my third is looking very likely ASD. He’s a lovely little happy boy but I just can’t keep thinking how different our life might have been if we’d stopped at two DC, especially as the older two are a lot easier now (probabaly in that sweet spot pre teen!) in all family situations I keep thinking about how it would be easier now. It’s like an obsession comparing our lives to what could have been.

I know that sounds awful and I don’t regret having a third (he was very much planned).
I guess our lives are just looking different to what we expected. I also feel concerned it could or already is effecting our other DC.

His biggest most noticeable problem is delayed speech. He finds ways to communicate but speaks in phrases (Gestalt language professor). He’s got many of them and some are very clear but he engages in zero conversation, although he’ll day related phrases to some of what we say.

He struggles with instructions unless they’re routine.

He starts school in sept 2027 which I’m petrified about. I know a lot could change in a year but possibly not enough for mainstream.

He’s having private speech therapy which I believe is helping. He shows no signs of potty training at all. HV said at 3 he was globally delayed.

If anyone else has been in this situation can you help me see what the future could be like? I know of course all journeys are different.

Also aware I sound a bit desperate! (Which I am).

My DS was officially diagnosed at 3 years old, he attends mainstream school, does well and is happy. He’s still non verbal despite speech therapy but has gotten better with non verbal communication and making slight sounds.

He's almost 8 now and is a happy, loving, very intelligent and funny little boy, he occasionally has bad days but what child doesn’t? My Neurotypical 5 year old is harder work than my son.

Thanks @Cantwaitforwinterthat’s great he does so well. Can I ask what he was like at 3.5? Did he understand instructions? X

My DS2 was non verbal and happily lining up crayons in a corner at 3. Had a few indistinct words at 5, but was unintelligible until about 8. Global delays, went to special school at 4.
Made amazing progress... learned to read and write at 10 (reads well, writing like a 5 year olds as an adult) and with the help of MENCAP to get him supported work experience... has now been employed for 10 years at ASDA! Works full time! He'll always need support and won't likely leave home (as frankly I don't trust supported living and he loves our dog too much to want to try it)
But the little boy at 3, 5 ,8 and the gentle autistic man he is are world apart. And he's the centre of our family :)
He was also a gestalt language learner, and when he learned to talk it was very stilted phrases, and gradually they became more useful...but he still talks like that to a large degree...which actually works well in customer service😁
He's also VERY repetitive, which can be wearing at times, but we've learned to live with it!

Try not to look too far into the future as it can be scary and overwhelming.
Our youngest DD was diagnosed at 3 1/2 with autism and SPD later ARFID. We were told don’t rule out special school.

She attended mainstream with support and achieved academically at the highest level. Every child is different. Early intervention is so important.

Please don’t be afraid of special school. Most are wonderful places. I taught in an Outstanding Special school then was an advisory teacher/manager in an Outreach service based there.

Right now you will be grieving for the child and life you thought you would have. Be kind to yourself and give it time.
He will make you smile and impress you every day as I’m sure your other DC do. Maybe having him in their lives might shape their future careers?

Try to embrace your new path. Join parents groups if available. You will meet parents who understand. Post diagnosis you should be offered a post diagnostic Programme such as Early Bird EarlyBird plus.
I’m not trying to Romanticise it all. There will be lots of tears and challenges but you can do it.

Could this help?

www.autism.org.uk/what-we-do/support-in-the-community/family-support

Sorry for the late reply.

He’s always understood instructions, following them is another thing.
At 3.5 he was very typically autistic, lots of stimming, repetitive behaviours and pattern following. One thing we’ve always known is our child isn’t dumb because of his autism, it’s a common and unfortunate misconception, autistic children are insanely intelligent, they just struggle with processing emotions and everyday situations, never assume they don’t understand.

I should add, if I had the choice to go back 8 years and have my son not be born autistic, I honestly wouldn’t. It may sound cruel from a perspective of the child’s life but he’s taught me so much, influenced my life as a mother and I wouldn’t change him for the world, he’s not missed out on any opportunities, attends every family gathering, school trip and activity, he loves sports day, group activities, gets on great with his younger sister, is kind to animals, has many interests and goals. I don’t believe he’ll miss out on anything in life

My DD was diagnosed at 7 but there were signs at 3.5 esp with language she has an EHCP but is thriving at a mainstream secondary school. Academically she is averagey but has a brilliant memory so does well at history which she loves and is a brilliant dancer and competes/is in shows etc...because she can copy and learn a routine very quickly!

@Sonolanona such a lovely story of progress and it sounds like he’s so lucky to have you. This gives me so much hope!

@24Dogcuddler Thank you. Just what I need to hear. I’m not sure why I’m afraid of special school because I know if it’s right it’ll of course be the best place for him. Who knows, in a year he could progress more than I expect and be ok in mainstream.
You’re right, it does feel like a bit of grief for what might have been. Good point about my other DC, they are already so caring and patient with him. I think they’re only just starting to notice he’s different to other kids his age.

@clareykb lovely your DD is doing so well. I have noticed DS also has a very good memory, maybe no different to my other DC at their age but it’s something I’ve picked up on. Hopefully this helps with school.

@Cantwaitforwinter I do worry about DS not following instructions. He knows “time to go”, “upstairs for bath”, “going to the supermarket” etc but anything new he just doesn’t understand, either that or he just doesn’t do it and is choosing not to do it, I’m not sure. Sometimes he just seems too much in his own little world to take it in!

He can count to 10 and I think I recognises some written numbers but wouldn’t know how to pick out 5 of something for example.

I'm also navigating similar to the OP. Thank you all so much for your incredible perspectives . It's brought tears to my eyes xx

My now 8 year old son was diagnosed as autistic at 3.5. He started mainstream school in nappies and unable to follow or understand instructions. He spent a lot of time outside the classroom and didn’t have friends.
Now, he is doing well at school. I still think often how easy my life would be if I’d stopped at 2, he’s the youngest of 3, he’s can be draining talking about the same thing and whilst he used to amuse himself lining things up or writing lists, he struggles to keep himself occupied like his older siblings do. However, he’s unrecognisable to how he was when we couldn’t have a conversation and everything was a battle.

Despite all of this I do sometimes wonder about autism as he doesn’t care about loud, busy or new places. He doesn’t really stim. He flaps his hands about once a day max when excited or frustrated. He never had a meltdown or tantrum. But then his speech is very delayed, eye contact is on his terms, he never waves and rarely points. He’s started responding to his name recently but it’s not reliable. He is a fussy eater too. He doesn’t seem to feel a need to mix with other children whilst at the same time doesn’t seem to mind them playing near by, he just doesn’t seek interaction. He does with us at home a lot though.

@Santasbigredbobblehat wow that’s excellent progress. So good to hear it can be possible.

Has your DS stayed in mainstream?

it really is draining thinking and talking about it all of the time!

From the school side of things, many mainstreams have plenty of experience of supporting children with ASD. There are plenty of children in mainstream who are pre-verbal in Y6 and who have had successful school journeys up to that point. It may be that ultimately a specialist placement is the best place for your son but don't underestimate what mainstreams can provide nowadays.

I've been in that exact situation and felt how you describe. It's really hard to admit and I'm full of guilt but I can't help comparing this to parenting the older ones and thinking about how much easier life was before. I love him so much and it hurts to think that way. Luckily I do still get to do things with the older DC but not so much as a whole family as the younger one takes up all the attention and he won't have things anyone else's way.
He has just finished Reception, he started in nappies, finished fully dry in the day 😀 Most of his speech is still scripts and he can't hold a conversation but he can make his needs known. He developed some lovely bonds with school staff. He had an EHCP for extra support which is very much needed as he can't engage with group learning. He's in mainstream school but I do think specialist is a possibility in the next few years. I can't say it gets easier yet, maybe it never will. But there are definitely good moments, them milestones feel so much more special after waiting a long time for them, even wondering we may never get there. I have ups and downs, sometimes I think he is going to need lifelong care and have a difficult life, other times I look at what he has achieved and remember he is only 5 so there is still the chance he will be a functioning adult.
I do remember last summer, which was before he started school, being an awful time, I was so worried and anxious, I cried a few times. When I think back to that I can actually see that it has got easier in some ways, but that may just be that I have become more resilient.
Not sure if my waffle is any use but I just wanted to show some solidarity 💕

Yes. He’s in mainstream. They’ve supported him really well. He had his EHCP before he started school which helps. Also, he’s definitely in the right place, his reading and writing is expected and he’s very good at maths. Socially there are issues, but we manage those. He goes to clubs rather than play dates as he doesn’t get invited but the clubs help him feel connected.

@JLou08 Thanks so much for the lovely message. I have also cried a few times too. I’m really hoping for some good progress over the next year. Also hopefully some potty training but I’m doubtful!

It really is so hard not to compare or worry. I don’t even know how I’d do that. I just keep imagining my life with just my older two. I guess it’s not all about the possible autism but also about just having three in general! He’s actually very easy going, partly what made me wonder whether there was more to this than just a speech delay.

@Santasbigredbobblehat Sounds like he’s done so well. Sad he doesn’t get invites for play dates. Hopefully that changes one day and feels included.

@Crusttt I know so little about SEN or schooling in general I think I have probably underestimated how supportive mainstream could be. I guess I just see that he will not sit still in a group or at a table if told to. He will absolutely not join in with singing/story time etc at toddler groups. He’s loves going to play but at those times he just wants to run around. That might be his age I suppose!

My son also wouldn’t join in with any singing or carpet time at that age. He still won’t do class assemblies or singing, but he can sit in the carpet for most of the session but has brain breaks/sensory circuits.

@okroger my DS is 4 next month and is basically non verbal still. As with yours he's an awful eater and he recently had to stop attending his childminder because she just couldn't cope with his behaviours when he was dysregulated, which has gotten more frequent and stronger as he gets older. I'm awaiting pediatric appointment to get him assessed for autism and I also think he has SPD for sure. Like you I'm terrified of him starting school next year, especially if his speech hasn't improved. Also he's still in nappies and potty training is nowhere near ready to happen. I'm hoping to secure an ehcp before he starts school because tbh id prefer him to be in a specialist setting. As he's got older he seems to not like being around other children for any length of time so I'm so worried about schooling😭 I hope everything works out for you 😊

My 8 year old daughter with autism is very delightful and happy. We've had many a rough road but I would happily have many more children like her. I have three other children (neurotypical) and finding them much more tricky...and moody.