So stressed about DS3 likely autistic

[Mysweaterisonbackwardsandinsideout]

My lovely DS is 3 and it’s looking very likely he’ll be diagnosed with autism. He’s speech delayed and delayed with his communication and interactions. He can talk but he’s miles behind kids his age and never answers a question or has a conversation.

I feel so bad for him. All I keep thinking about is way into the future. Can he get a job, enjoy travelling, can he live alone, get married? etc. I know I’m being ridiculous looking that far ahead but my mind just keeps going there and its consuming all my time.

I keep feeling bad on my older girls. They’re 8 and 10. They’re now aware of him being different and I can tell they they’re concerned.

Often I feel like this payback for me not just being happy with 2DC. He took almost two years to conceive with multiple miscarriages before and I keep thinking maybe it was a sign.

I just wish I could see into the future.

Sorry I know this sounds so dramatic but I’m wondering if anyone else has felt like this?

I have two (of four) with autism.
DD1 is high functioning but has had a lot of difficulties. DS2 is not... non verbal til 5, and incomprehensible ( very difficult to understand) til he was 9 .Went to special school where he had friends...still sees one now and again, no GCSEs or anything but learned to read at about 10.
After school, MENCAP got him a supported work placement..and he's now been at ASDA for 10 years!!! He's probably the best worker they have ever had as he never deviates from the rules, never goes off sick, never has a hangover, remembers every customer.
He'll never live independently, marry or drive, can't shave himself or make a sandwhich; is obsessed with Dr WHo and musicals and he still eats paper, plastic and his clothes. But he's ok. He's loving and gentle , adores our dog and his nephew and niece, and while he needs support in daily life, he is the centre pin of our family.
I was devastated when I realised (early like you) that he had autism, and could never have believed he would ever have a job or be able to talk to us.

Take it one day at a time...

Hi @Mysweaterisonbackwardsandinsideout I could have written your post several years ago. I knew something was different about my son from about 18 months and felt no one was listening. Then, suddenly, people began to agree and I spiralled!

my son was diagnosed just before he turned 5. But, had been going through assessment since he was 3. My son doesn’t present with ‘typical’ symptoms and the dr said he was a bit of an enigma. I was so stressed throughout the whole process and in the immediacy following diagnosis. I actually work in the field of autism so I was panicking about his future constantly.

He is now in primary 2 and doing so well. He had input from speech and language (privately from age 3) and then NHS when he got through the waiting list. He is in mainstream school, has a lovely wee group of pals and is achieving well academically. He struggles a bit with some social ques and we can see when he’s maybe over stimulated etc… but he’s doing so well compared to how I thought he’d be.

I would say age 2-3.5 ish had some really challenging times. He couldn’t communicate his feelings and the frustration came out in huge meltdowns and outbursts. I’d never have thought we’d be where we are now. so please be reassured and my mantra was always ‘everything is temporary’.

I still worry for his future. He’s only 6 and I don’t think we’ll really know how independent he’ll be until
he's older. But I feel more equipped and more confident as time goes on.

its an adjustment so please be kind to yourself.

Didn’t want to read and run. Our son had a giant speech delay, we just thought he was taking his time. By 2.5 our local health service diagnosed him autistic. Where we are (overseas now) it opened up a multitude of services which was life changing for him. He started speaking sentences around age 3 after 2x weekly speech sessions. At 3.5 he feels like a different child. He’s truly talking, about his day, his friends, his books. He learns gestalt style which makes a lot of sense now. He’s was waiting to have all the words in a sentence to use them rather than one word at a time. We just got him re-assessed a year later and they now think he’s gifted, and very high functioning, and may be totally ok (though who knows). A year ago I was in tears, grieving a life I’d imagined he would have. Now there’s a shot that comes back. He’s probably always going to be a bit different, but maybe he can have regular schooling, friends and a job. For what it’s worth, my DH would have been diagnosed Asperger’s in the 80s. He is a well paid lawyer. Takes him work to make friends, and hates change. If you have money throw resources at your child for speech and OT. Get them in nursery to socialize. Don’t write their chances off. Einstein didn’t talk till he was 5… just saying.

My DD is now 16 and has autism. She was so behind when she was little. She still has difficulties but she is doing so well. She has her GCSE’s coming up and has predicted high grades. She off to college in September to do a-levels, and is honestly thriving. Don’t create a future for your dc in your head that may well not come to pass.

My ASD son is a doctor. He was slow to talk as a child but it turned out he had glue ear. Apparently, according to the specialist who treated him, the very first thing to suspect with a speech delay is a hearing problem.

Op, autism comes in as many forms as there are people on the spectrum. Think of Einstein and half the founders of large IT companies.
I'm autistic, speech problems into my teens, never diagnosed because it wasn't a thing back then. No support.
Starting from zero, I've managed a 40 year career in IT, earned 3 to 4 times average salary, raised my ds, nice home and as adequate a pension as those around me.
Having autism can provide traits that are very useful - the ability to focus and be very single minded in solving problems or learning skills, some have brilliant logic or near perfect memory. Some are fab at maths or art because they can be a bit obsessive about their interests.
So if your ds is diagnosed, just continue to support him as a loving mum. Encourage him in whatever interests he had (even if they are a bit unusual). He's a fabulous, interesting individual human being with just as much potential as anyone else.

ETA Sorry, didn't mean to quote the above post.

He might just be taking longer to develop. My DC turned 3 practically non verbal except a few words specifically "off" (didn't like clothes textures) and that was it. Gross motor skills were delayed, he was still in pull-ups and ended up being hospitalised after refusing to eat or drink for a week. Hospital referred him to the paediatrician and Speech and Language for suspected autism and/or learning disability but during the waiting period for assessment he started to catch-up. By 6 he was in line with his peers and there were no concerns about his development. No diagnosis was ever made and the conclusion was that some kids just take longer and boys in particular can be later to develop speech.

It is hard to get your head around everything. First off, it may just be speech delay. I work with children who have Speech and language needs and a lot are just Speech needs. Keep everything simple, single words then build up to two words etc 😊

Both of my sons are autistic.
Ds1 (18) was diagnosed age 4 - very delayed speech, struggles massively socially and has high anxiety, OCD. Had a really rough time through secondary school causing him to become mute. Came out the other side passing GCSE’s, went to a wonderful 6th form college who supported so well. He is a wonderful young man and now is working as a TA in an SEN school! He’s well supported there and there are some days where he finds it tough. He is very routine driven so if they suddenly change his timetable in work he found that very hard at the beginning but now he deals with it better as he understands that these changes will happen.
He is such a wonderful young man, he has independence but he is cautious and will always check in with us.

Ds2 (14) - also speech delayed and referred age 4 for Autism but he’s very sociable, loves being with people (but also hates people being out and about 🤣) gives amazing eye contact - the reason for no diagnosis given age 4.

Went back to them age 7 and he received a diagnosis. He is very different to DS1, fiery and will escalate from 0-explosion in seconds. But we’ve put strategies into place and as he gets older these work to help calm. He attends an SEN school but was in mainstream primary with a TA support.
In a school with the right support he is succeeding and he loves it. We’re not sure how it will work after school/college as he will still need some level of support. DH walks him to school, where as my other son walked himself from age 11. So has little independence in that respect.
He is your typical grumpy teenager, but we can work out what is teenage and what is overwhelm/autism. He’s lovely and despite being taller than me still loves nothing more than hugs and to be squeezed. His understanding of language is still delayed and needs instructions, for instance, to be 2 steps at a time. He’s also going to be sitting GCSEs - as long as he’s happy and comfortable doing them.

Every year has had its ups and downs and it’s tough going. I don’t feel guilty for sometimes getting upset or cross that they find things tough. But I look back at how far they’ve come and think wow, they’ve had to work extra hard to get where they are.

Just take a day at a time. 😊

Thank you so much for all these replies. It’s so reassuring to hear these stories. I know my DS will have his own story but it gives me so much hope.

He is currently having private SLT and he’s had a hearing test (all fine).

He is a gestalt language processor. He can come out with whole sentences from Paw Patrol but can’t make his own.

Of course this could be a speech delay and nothing else however at 3 he only just understands basic instructions such as “put shoes on” and only just respond to his name sometimes. I’ve only seen him wave a few times and he never really points. He’s also lost words and phrases when he’s learnt new ones. He has very little concept of colours, no concept of shapes. He can count to 10. He licks objects and puts a lot in his mouth, he doesn’t play with other kids at nursery. He’s happy to be around them but doesn’t seek play or friendship. He’s got no concept of girls/boys or how old he is. He does little imaginative play although that’s increased a little recently.

Of course some of these alone aren’t signs of autism but I’m thinking together they could be. His nursery worker and SLT have said they think there’s enough to expect a diagnosis at some point.

@Mysweaterisonbackwardsandinsideout your son sounds exactly like my 3yo grandson.
I'm in a very difficult position as I've suspected he was autistic for a while now but his parents don't seem to be aware, nor has his nursery mentioned concerns.
He will be starting school in 18 months and the school will need to be aware to be able to offer support.

I really feel like I'm in an impossible situation.

@RaraRachael That’s a tricky situation. Strange that nursery haven’t pick up on it. I guess it’s just about being there for support if/when it does get flagged.

OP, take a look at Intensive Interaction. My son is severely autistic but this approach has made a huge difference to his communication and social interaction.

Re thinking it's payback for wanting a 3rd child...
My 3rd child is an absolute nightmare. He's diagnosed autistic and I'm sure there's other things going on, he's awaiting an ADHD diagnosis. He refuses to learn self care so I have to do everything for him like brush his teeth etc. he refuses to not wear pull ups and if put in pants would just wee in his trousers. He goes through phases of shitting in his nappy too even though he can use the toilet (although I have to wipe him).
I do feel it's my punishment for wanting a 3rd when my husband didn't. But that's just silly. Why would we be punished for wanting a child.
Your son will be fine with support. When he's old enough make sure he gets an ehcp as soon as needed. It'll help should he need a special school. My oldest son did really well at special school (he's also autistic)

Both my friends’ children were speech delayed and were quite behind developmentally. Both were later diagnosed with ASD. My two had great vocabularies at an early age and were meeting all their milestones. My eldest has been diagnosed with ASD and ADHD. My youngest has suspected ASD. They are all teenagers now. My friend’s children are doing exceptionally well, maybe struggling socially from time to time, but hard working and doing really well at school. My two are all over the place. Eldest struggled at secondary school, despite being consistently ‘top of the class’ in primary. My youngest has an anxiety related severe illness and is unable to attend school. Nobody can predict the future.

It's fairly common for nurseries and schools to either not notice or not mention it. There is a lot of grace needed for small children and often even "red flags" for autism are developmentally normal at a younger age.

I asked 2 different nurseries and 3 different class teachers if my son could be autistic and they all said no. He ended up in special school so he is not a borderline case. I think we assume or hope they will spot these things but they really aren't experts and it often comes down to parents, who are often in some combination of denial or processing. But time helps. Sometimes the wheels falling off is a necessary step before anyone takes the parent seriously anyway.

Hi op, it doesn't sound dramatic at all, it's very understandable (and common) to feel the way you do.

It takes some time processing it all really, and many experience a period of 'grief' for what could have been. But as others have said, you can't really know how his autism will affect him as he gets older. A diagnosis is a very positive thing, and with SALT and other support in place, he may progress. It's a cliche but all you can really do is take each day as it comes. You will asjust. That fear for his future will always be there to a degree, but you get better at trying to make the most of the here and now as you adjust to the knowledge - and you'll become an incredibly strong advocate for him, which is the most protective factor in positive outcomes.

My 9yo dd was finally diagnosed last week. She has a very different presentation - no obvious early signs but struggled more at school age and currently not attending school due to burnout from masking. I've sometimes cried myself to sleep looking at stats around mental health issues for autistic girls. At times we've been on our knees. Then she sends me a screenshot of a discussion thread from one of her therapy sessions and I realise the importance of parental support and advocacy:

"Hello, my name is xxxx. My life is very hard sometimes but I can always push through it with my mum and dad's support." ❤️

@Miskast Thanjs. He's got a little brother who's one and responds to his names, interacts with us etc which are things he never did so I'm hoping they'll notice the difference.
I find it odd that the nursery haven't said anything. The nursery that fed into my school was almost obsessed that children were autistic. When we got them in school, about 70% weren't.

@RaraRachael it might be worth looking up speech & language milestones as these are fairly well defined and would be worth a referral via HV to a SaLT assessment if he is not meeting them.

I've had a quick Google and it all seems a bit more complicated these days but eg having no words intelligible by an outsider and no linked words (v simple 2 word sentence eg hi daddy) at 24m would probably raise a referral for S&L assessment.

I know you need to be very careful as a grandparent but speech & language is perhaps a less intimidating thing to tackle, and it's well established that early intervention helps if needed. I have always started from a position that an assessment is just that, it's not intervention or therapy it's just asking an opinion from someone more expert. If they say he's fine, fine, at least you've done due diligence. But I can also imagine I might not have taken it well if my mum had pushed this on me.

There is a vast range of typical development (or nearly typical) in these very young children. I think my view of "normal" was based on my very verbal eldest, but really she was just one end of a very wide spectrum of typical.

My DS was very similar to how you describe your DS at that age @Mysweaterisonbackwardsandinsideout he also had echolalia with phrases from his favourite TV shows and as he progressed in his communication he would use the phrases in context so when something went wrong he would say 'Grimbles' like Grandmaster Glitch in Go Jetters. Or when he was surprised or excited he would say 'Shiver me whiskers!" like Kwazii Cat in Octonauts.

We did the Hanen More Than Words training and then the SALT taught us how to use PECS (picture exchange communication) with him and nursery used it too.

Thanks so much for all the replies. I’ve been reading them over and over again. I wish I’d posted ages ago but I really thought I’d be met with people thinking I was lucky to have three health children.

I feel so much better about it. Maybe he will struggle or go to a special school but either way he has us to support him and we’ll do the best we can x

I'm just coming back to add a little more.
I have the perspective of being a parent of one child who is, for want of a better description 'able autistic'...also female, so most of the signs were missed early one although with hindsight is was pretty clear she was not neurotypical, and the early years were spent battling with ARFID and ADHD so the ASD was ignored. Her life has been difficult because she is autistic (very) but able and so much is expected of her that is hard.

My youngest was clearly delayed in all areas...from walking to speech to comprehension... and he got help early.. was in special ed from nursery on.

I feared for his future...god how much I cried about him! But the reality is that his life is ok... he had a gentle, lovely schooling, support all the way which has enabled him to flourish. then special needs college and supported into employment (he works on a kiosk checkout which is his safe space) Asda have been FANTASTIC with him... gave him a chance to try, and realised that his autism is a bonus... he works hard, remembers everyone and has the same little conversations every day... perfect routine which makes him, and them, happy!
Do I wish he could live independently, marry, drive, take a holiday without us? Yes of course... but equally he hasn't had to experience heartache, jealousy, financial worries..a mortgage. His life is simple, predictable and loved.

Side note... my son learned to talk almost exclusively through taking phrases he heard and trying to use them (he still does in fact) He was echolalic but that's how he built language, and also how he eventually learned to read :)

Yes I second this @Mysweaterisonbackwardsandinsideout . It wasn't the case for my son but for my niece. She speaks perfectly now but with an accent. Nobody knows why.

My oldest wasn't talking at 3. We had loads of speech therapy, both nhs and private and was very slow going. In reception they queried if she was autistic due to her challenges in relationships with other children, emotionally chaotic etc. Fast forward to year 5 - she is now top of her class, fantastic friend group, captain for 2 school sports teams (a first for a year 5 student, it's usually year 6's). She is on wait list for an autism assessment, but she is doing really well.
Just wanted to bring a positive story to hopefully help you be less worried for his long term future x

My son is 4 1/2. I have been worried about his development since he was 6 months old. He has now been diagnosed with autism, global delay in all 7 areas, I suspect AFRID, PDA and interoception issues. Like you I had him late at 39, age gap with older daughter and had many miscarriages before him. It’s an absolute rollercoaster isn’t it?

the fights for survival are never ending, the not knowing what’s wrong, the fear of predicting what’s wrong, the endless wait for diagnosis then when you do get a diagnosis the absolute battle to get support. I think I e battled with every single counsellor, SEND employee in my council, even write to Bridget Phillips on! It’s hell, and then the government white paper which removes legal rights, funding inadequate, criteria for severe disability based on physical disability. The fight for his EHCP only for it to be taken away in 7 years. I work in education and even professionally I know this legislation is woefully flawed and underfunded.

on top of this friends and family don’t get the struggle because he doesn’t look autistic, and why can’t he sit still in a restaurant for two hours… clearly bad parenting.

the fear of the future, will he beable to live an independent life, what will happen when I die? This is the background noise all vying for head space in my brain.

you can’t let it take over. Celebrate the little wins, embrace his quirks and amazing personality. Try to live in the moment- today for example I wanted to sew but my son wanted a cuddle so I sat on the floor and cuddled him we then sat together and he pressed the buttons on my sewing machine.

I fight and fight and fight for my son but I know I can’t predict the future so I need to live in the present. I just realised recently that my sister n does everything everyone else does on the planet just 2 1/2 years later. You know what that means… he can do anything just in his own time. He is a gestalt learner and spoke his first words at 4, I now can’t get him to stop talking! He couldn’t walk until he was 2 1/2 but now he climbs on everything. He never acknowledged any child, but this week he hugged a girl who was crying and told her not to worry.

its all there, just in his own space and time. So the government can fuck off, those who don’t get it can fuck off, strangers staring disapprovingly can fuck offhand my jumbled head of worry can fuck off!! He’s going to have a wonderful life full of the passions and interests he’s into at his own pace and time.

if no one told you today you are doing an awesome job, your son will find his way because he has a wonderful mother who cares x

I remember the feeling when I'd spent so long keeping the worries in my head, when someone else validated it out loud it took me a few weeks to actually process it and how it felt. Although I'd gone through so much in my mind, having other people say it made it feel different. Give yourself some grace OP and just allow yourself some time to process what your feeling.