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).

I think you just accept it because what other choice is there?

DD is ASD since about 7 years. She wasn’t speaking full sentences at the start of reception but quickly made progress. She isn’t high functioning and really struggles at school. She’s now in year 7 at main stream secondary and we are moving her due to bullying. Fitting in is hard but she has one friend. Hard to get her to join clubs. Home life is her salvation. Sorry OP but it’s different for everyone and it’s a long journey. I think she will eventually be fine though and of course we will be supporting her whatever it takes.

Not the most helpful

Op I could have written so much of this a year ago, although both of mine are ND but my eldest was super advanced developmentally and was so ready for school despite her challenges.

DS was diagnosed a little over a year ago at just under 3.5. He was non verbal until 3, and then when he did speak, was a gestalt language processor, and then with support/SALT input went on to use these to develop more spontaneous speech, albeit very narrative of what's around him (that car is red, the boy has a bear, etc) rather than anything expressive.

He has bowel/bladder issues and potty training seemed a distant dream that we couldn't even begin to imagine cracking, both with the ASD and the medical issues.

We applied to school last November and I genuinely wasn't sure if we could manage mainstream, but applied anyway and decided to give it a shot.

He is now nearly 4 and a half, and starts school in September.

The speech has come on in leaps and bounds. Expressive speech is slowly appearing, although we do sometimes default to scripts for that, but outside of expressing needs/feelings we're getting much more conversation and back and forth. He likes to process everything out loud, which sometimes helps us get an insight into his brain a bit sometimes, even if he can't do that in a conversation. He can follow 2/3 step instructions.

He potty trained himself for wees in November, and tried poos in December but we called it quits because it wasn't going well and he was getting really distressed. He tried again in February, at his own request, and cracked it there and then, not a single accident, although we're still working on coordination for wiping etc.

He still has his meltdowns, but we're getting better at knowing his triggers, and the warning signs, and have been able to communicate these to school. He is a bit more receptive to allowing us to help, and we can reason with him a bit more when needed.

And while some of his challenges are showing up more as he gets older (food/sensory issues) His personality shines through now. He doesn't always enjoy the typical things you'd expect, we were at a party the other day and he didn't join in a single party game, but he has some lovely friends. He is so kind and affectionate, loves to hug/kiss his friends goodbye. He's (mostly) very good at sharing, and loves to make people laugh. His problem solving skills are like none I've ever seen in a preschooler (probably from being non-verbal for so long). He loves his special interests, and can tell you all about them. He's nothing like so many of his peers, and our lives all look a bit different as a result, but he is an absolute joy, as I'm sure your DS is, and we're adapting. He's happy in his own skin, for now, and is so excited for school. I know it will bring new challenges, but I, like you, this time 12 months ago kept telling myself "yeah everyone says he'll change so much in a year, but surely he's not going to change enough to cope in mainstream" and he really has ticked off so much now, he just wanted to do it in his own timescale.

@@DontBuyAnotherBook thanks so much, really helpful 😆

Ha sorry. My son is four, about to start school without many words, not properly potty trained and we have his autism assessment next week. I suppose I just have accepted it. Obviously if I do too much comparing with his peers it is a bit depressing. For example he would rather play with football cones than any toys.

@DontBuyAnotherBook glad you find it easy not to compare then 👍

Probably the easiest way to accept the reality of our DC.

Wonderful post 🥰😍

I didn't say I found it easy not to compare but that I find it best not to. Not sure why you are having a go? You asked for advice?

Keep going with the speech therapy as long as you can.
As a parent of 2 ND children I want to say it’s quite scary when they are little. But believe in your child, spend time with them, help them to develop this interests and they will come. We think one of DS first interests was the color yellow and later on rocks. He loved physics. Help them to expand their knowledge and encourage it.
what @Sonolanona is very true

Also my younger autistic DS hated singing at nursery and hated me singing. We agreed with nursery that he would do coloring in when the singing was happening.
Hes now 19, loves music and played the clarinet for years to a good standard.

@DontBuyAnotherBook Having a go? 😆
Many thanks for your advice but it wasn’t very helpful x

Such lovely posts on here thank you. I give me so much hope 🙌🙌🙌

Just to add my own experience because I really feel for you. I remember being at your stage and stalking mumsnet for similar children. It's really really hard time so just go easy on yourself.

My DD at 3.5 had no words and no interaction. We were just coming out of Covid and I was terrified. She didn't follow instructions and used handleading to get her point across. She just never seemed that interested in us.

At 4 words started coming slowly at first and then into gestalt style phrases. She was also diagnosed with autism at this stage.

In the next few years we did a lot of private SLT. The practitioner used Attention Autism and then moved onto other activities. We sacrificed a lot to pay for these sessions as at the point her words really came on we were going weekly (I'm in Ireland but I was able to take out a health insurance policy to cover 75% of the cost if this is an option for you) we also started private OT at this stage. We worked a lot at home and her preschool did on language activities.

She is now nearly 9. Her language is excellent, tested at average for her age. She has sensory issues and gets mad and frustrated at times and is a picky eater. But life is really good. Just back from an amazing busy sightseeing holiday that she loved even if she ate chips every night.

I know there is no point in comparing but when I get upset at something I keep thinking if I thought this would be her life at 8 I would have rejoiced.

Mind yourself
X

Wow thanks so much @Martymcfly24 this is lovey to hear and so glad you’ve seen so much progress, she sounds great. Did your DD go to mainstream school? It must have been really hard going through Covid at the same time.

Like you said no point comparing but it really does help me feel more hope which is what I need.

I do feel really grateful that he is talking a lot now (just not typically) but he’s very chatty and the majority is in context. Also he is very very easy, like I said never had a meltdown or tantrum, very rarely frustrated and no need for routine. Hopefully these are all good signs for the future, of course it could all change!!

She's done 3 years in mainstream school. She has a Special Needs Assistant who helps her stay focused and takes her out for movement and sensory breaks. She loves and hates school like most her age!

She also has no need for routine and is very easy going with changes once she is kept in the loop.

Keep focusing on the positive.
X

Are you sure its autism and not s&l delay, my ds was thought to be autistic but was diagnosed at 4 with S&L and social communication delay, he had no words nor understanding of words when he turned 3 but gradually with speech therapy and support at nursery he was just about speaking clearly at 4.5, there was also a cartoon on youtube called Steve & Maggie which is designed to help young children learn English as a second language, that was really helpful. Finally there is a book on potty training in these situations, I think its called Ready Set Potty.

I sympathise.

I had two girls and then I had ds. They're all adults now.

I (still sometimes) joke that if I'd had my dc in opposite order, then at least I'd think my parenting was getting better!
I sometimes describe parenting them as if I gave them a line and told them not to cross.
Dd1: wouldn't go near the line in case she accidentally stepped over
Dd2: would stand on the line to see what was beyond to assess whether it was worth arguing over
Ds: run as quickly as he could over the line to see how far he could go.

I suspected ds had ASD/ADHD at about 3yo. He had glue ear, so I was fobbed off as it being that, then "he's a summer boy - he'll catch up" for far too long. he was finally diagnosed at about 12/13yo when I pushed, and I'm very glad I did.
He was verbal, very much so, but had a lot of sensory issues and was euphemistically "lively" so going out was always a case of hovering near him before he did something that wasn't a good idea. <understatement there>

At 3yo I did fantasise about how much easier my life would have been if he hadn't been around. It wasn't that I didn't love him, or didn't want him there, but life would have been easier. Tbf I don't know how much that would always be the case with three though!

Sometimes the girls felt he got away with far more, but a lot of that was exhaustion. He had ear infections after ear infections, a lot of hospital appointments and A&E trips for various things and was just full on when awake, hated being left, and needed me to get him to sleep.

I wanted a fourth until ds. Then as he got to the age (about 3yo) where I wondered if I wanted a fourth I thought about going back to nappies (edited to say that he potty trained easily because his sensory issues meant he hated nappies/feeling of being wet and preferred being naked. Persuading him to be dressed was much more of a challenge!), night wakings and especially when you are waiting for a child to do an activity and chasing around after a younger one v sitting quietly and chatting smugly (!) and realised I didn't want a fourth. I haven't even had a "I wish" feel since - and I always thought until that point that I was desperate for four children.

He's now at uni, and amazing. He does things that I never thought he would, he has lived a year independently and not had any ill effects from his own cooking or doing something stupid. he has friends - ironically I'd say his friends are far more wide and close-knit than the girls.
He's got a quirky sense of humour, which teachers mostly loved. In fact I think most teachers really liked him - I can only think of one who didn't, but I know a lot of people had issues with her and I just bypassed her when needed. She was a prat so more loss to her than him.

I'd say about 6-8 was when improvements really started to happen. Sorry, that probably feels a century away at this point, but hopefully that gives you hope.
He's a joy to be round (most of the time), very different from the girls, but just as amazing.

Have found this thread really useful. My son is 4.5 and was privately diagnosed (after 2 years on nhs waitlist and giving up) as autistic with PDA profile a few months ago. I imagine has ADHD too but they don’t diagnose that at this age.

he starts mainstream school next month and EHCP is a shitshow in that we are on week 30 with no draft yet. School have been fab and already have organised a 1:1 for him.

My biggest piece of advice would be to start EHCP paperwork ASAP.

My son has some huge strengths - fantastic reader, great at numbers, very very confident (no social boundaries!!). He does get very frustrated and upset when he can’t do something , he has poor fine motor skills, restricted diet and his social skills are ‘off’. Lots of info dumping etc.

He had a speech delay and had private speech therapy as a 2 year old. Now in his reports and assessments it says he speaks formally like an adult.

I wish I had enjoyed him more over the years rather than spend so much time worrying but I suppose that’s just human nature

Haven’t read all your posts but you DS sounds very like mine. He was diagnosed around 4. He is now 7 and in mainstream school with support. He is doing well because he has the right support in place but I am already thinking ahead to high school. Everyone comments about him being the most content child which is true 99% of the time. He is more sensory seeking than avoidant so noise and busyness has never really bothered him. He does speak but still a lot of delayed echollalia but it is becoming more flexible and in context.

Voted YABU only because it feels like maybe it's a little early to tell what impact it will have? Some of the things you describe sound like they could be within the normal range for 3.5, but perhaps I'm wrong! Fingers crossed it will all be easier than you fear. 🤗

I do sometimes wonder whether I’m looking for things. Maybe if it was just the speech delay and not sitting still etc I wouldn’t be concerned. But his limited eye contact, lack of conversation, rarely waving or pointing, only sometimes responding to his name at 3.5 makes me thinks there’s more to it.

His nursery and SLT think so too.

Hopefully we’re all wrong!

Also lack of understanding/following basic instructions

I knew our DC was autistic from the minute they could walk at 10 months. Wasn’t listened to by HV so went to GP who went nuts and gave them a right telling off. I had a confirmed diagnosis in writing a little after their 3rd birthday.

DC is non verbal, has ADHD, severe LD. is in a mainstream school who have tried their best to meet need but unfortunately can no longer so we are fighting for a specialist school.

it’s 100% absolutely normal to grieve the life you would have had, not every day but here and there. We’ve never had a holiday because DC struggles with the sun and being too hot, we don’t go out as a couple because they don’t cope well with us leaving the house, and a million other things I could list.

DC is 8, and has recently starting using the loo and wears pants in the day, and has also given up their comforter both without much input from me but more because they were very much ready.

I try to focus on the wins rather than what we are missing out on as a family, but the grief comes in waves, so I just ride the wave and feel all the feelings and then just go back to celebrating the wins - for me, it’s the only way forward.

the best piece of advice I can give you is to ‘find your people’ there are a ton of ND bloggers on Facebook - ASD with a G&T, The Spectrum & Me, SENtipede, ADHD Love, and so many others. My best friend is still my best friend, but I’ve found my village with other ND parents locally so look for coffee mornings where you can go and offload in a non judgey environment.

feel free to message me if you want to chat x

p.s - I haven’t read all the other posts so apologies if this has already been covered x