Struggling to accept DS 3.5 is likely autistic

At your son's age (actually maybe a bit older, almost 4), mine was non verbal, zero interest in other kids, nursery had him scoring 8-20 months on the EYFS progress thingy across every part apart from gross motor (20-36 months there), zero sign of toilet training readiness. He was diagnosed autistic at 2 years old, we were suspicious from 9 months old. Went to hell and back to try and get him in a specialist school (hes one of the oldest in the year so started school at pretty much 5). He ended up at a mainstream primary whilst we were still going through the tribunal process to have a specialist achool named on his EHCP which he had from the age of 3.

He is now 8. Very much verbal (also a Gestalt language processor), very able to communicate thoughts, feelings, needs, and working with a private SALT on things like social skills, reciprocal conversation etc. Learning to read i think really accelerated his speech, he went from non verbal to full sentences in about 6 months. Hes achieving greater depth in all areas at school and has the classic mathematical autistic brain.

His social skills are also flourishing, he attends a number of clubs outside of school including cubs (full participation, camps and everything) and 2 different team sports.

He is an absolute dream of a child. He is very obviously autistic, he couldn't mask to save his life. But he is also kind, gentle, polite, funny, confident, and most importantly of all, such a happy kid. Hes never been violent or destructive, is great at knowing what he needs to regulate himself (better than a lot of adults tbh!) and is a sensory seeker rather than sensory avoidant.

With the right support (early intervention is so important, it sounds like you're all over that) who knows what your son may achieve. Its hard to adjust your wishes, hopes and dreams for your child, and to accept that the future may look different to the one you had originally planned. But in our experience, progress and time have definitely not been linear.

He’s had a few speech therapy sessions and they have helped a bit by teaching him a few more phrases. But he still will not answer questions or make any conversation. I very much doubt I will have any success with potty training him any time soon. I just want to try because I feel guilty that the teacher/TAs will have to change him, even though they do seem to be understanding about it.

Have you read Emily Perl Kingsley’s poem “welcome to Holland”

The Flight to Holland

You spend months planning a magnificent trip.
The destination is Italy.
You buy the guidebooks.
You learn the phrases.
"Colosseum," "Gondola," "Espresso."
The anticipation is breathtaking.
The day arrives.
You board the plane.
The engines roar.
Hours pass in eager waiting.

You board the plane.
The engines roar.
Hours pass in eager waiting.
Then, the intercom crackles.
The stewardess speaks.
"Welcome to Holland," she says.
"Holland?" you gasp.
"I signed up for Italy!"
"I am supposed to be in Italy."
But there has been a change in the flight plan.
They have landed.
You must get off the plane.
It is crucial to understand:
They did not take you to a terrible place.
It is not filthy, poor, or broken.
It is simply a different place.
So, you must go out and buy new guidebooks.
You must learn a whole new language.
And you will meet a whole new group of people you never would have met.
It is just a slower place than Italy.
Less flashy than Italy.
But after you have been there a while and you catch your breath,
You look around.
You begin to notice Holland has windmills.
Holland has tulips.
Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy.
They are all bragging about what a wonderful time they had there.
And for the rest of your life, you will say:
"Yes, that is where I was supposed to go. That is what I had planned."
The pain of that lost dream will never, ever go away.
Because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy,
You may never be free to enjoy the very special,
The very lovely things...
About Holland.

Almost all of this could have been written about my son. They sound so similar. He also has delayed speech and talks in phrases sometimes but will not make conversation, only follows routine instructions, no signs of being ready to potty train. He never points and has only recently started waving but only rarely and on his terms. We also suspect autism but I’m not 100% sure because he doesn’t really have sensory issues and does not have meltdowns. He has tantrums sometimes but can easily be distracted. Unfortunately I can’t really tell you what the future may hold as my son is slightly younger than your little boy (he’s recently turned 3). He will be starting school nursery in September and has an IDP (Welsh version of EHCP) that outlined all his needs and the support he needs. School is aware he is not potty trained and are fine with it because they understand that he just isn’t ready yet, but we will be giving potty training a go before he starts just incase he surprises us. At the moment the hope is that he will be able to attend mainstream school with support.

Those all sound like language and social communication delay/disorder, apart from the not sitting still but its pretty common for a 3.5 year old not to sit still. Nursery, two speech therapists and three doctors all thought my 3 year old was autistic but he wasn't. Has your son had an ADOS assessment?

That’s a very narrow minded way of looking at things! You SHOULD absolutely grieve for what you thought would be, otherwise how else will you get over it?

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

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. 🤗

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.

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

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.

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.

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.
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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
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