To ask about your ASD child?

[Thehonestbadger]

My DS is 3yo and non verbal.
He babbles 24/7 and Every few weeks he comes out with a word, totally in context (car, yoghurt, water, bye bye) but nothing between and seemingly little understanding of what’s being said to him. He’s nowhere near potty training, attention is fleeting he doesn’t engage with adult led activities and he stims almost constantly. His emotions and frustrations are pretty big but sometimes he seems so engaged and amazing but then it’s just gone again and doesn’t come back for days. He has started sitting with books and toys for 5/10 minutes which is nice.

His eye contact is good, he’s affectionate and he eats and sleeps pretty well which we thank our lucky stars for, but I just worry constantly where this is going as the gap between him and his peers is so big now. We are currently looking at special schools for him as just can’t imagine him managing in mainstream but I keep hearing ‘my Johnny was verbal within 6 months of school you’d be better with mainstream so he can copy the ‘normal’ kids’ - sigh. Annoyingly he has recently started copying other kids behaviour a bit so this is actually getting in my head.

Most of my worry comes for DD too who is only a year younger than him. I really worry for our family life. If you had a toddler like mine where did it go? What are they like now? Please please share I have no real life examples at all!

you’d be better with mainstream so he can copy the ‘normal’ kids’

I'm a recently retired teacher who taught children like your boy in special schools for nearly four decades. So many of our parents were given that advice from well meaning friends and relatives, but sadly it doesn't work that way. Children severely affected by ASD do not pick up neuro typical behaviour from other children, I'm afraid.

Those parents who delayed their child's entrance to special education for that reason almost invariably expected regret when they saw how quickly their child benefited from being in our school. They wanted the best for their child, but eventually recognised that mainstream had actually been a bad idea. Sadly both parents and child had found mainstream education exceedingly stressful.

expected regret

Experienced regret. Sorry, fat fingers.

@saraclara

Thank you. I think had he not suddenly started copying other kids recently I wouldn’t have let them saying this get in my head. He’s such a difficult case because In some ways he’s on the very severe end but in others he’s somewhat mild (like eating and sleeping and eye contact)

Hi @Thehonestbadger I'll give you my daughter's story with the caveat that you know you have met one autistic person you have only met one autistic person and each child's journey is unique to them.
My daughter is just turned 5. At 3 she was also non verbal and not potty trained. Around this age was in the shadow of covid and we were so stressed. She engaged in self harming behaviours, she had absolutely massive emotions and regulation issues. Very poor interaction also.
Over the past two.years we have engaged in speech therapy and ot (privately) . She attends a main stream preschool and will attend mainstream primary school next year with a Special Needs Assistant.
She can now hold a conversation, there was explosion of conversation but everyday new words and phrases came from the age of 4. She ask for things, gives opinions and can function verbally, it would be the standard of a 3 and a half year old neurotypical child.
With speech also came improved regulation she still gets upset at the word no but will get angry instead of self harming. She is very happy most of the time.
She will socialize with other children but sometimes prefers to play by herself.
She can be a maggot in shops thinking it's funny to run off.
She loves colouring (only started recently) bluey and trampoline.
She potty trained fully last summer. It was a slog but no accidents.
Apologies for the essay but I know sometimes it can be a very lonely place.

I agree with @saraclara . I'm also a primary teacher so I judged her needs against other children in the classroom of this age and the recommendations of her preschool teacher but we are always open to moving if necessary.

That's the spectrum aspect. ASD isn't a spectrum from mild to severe, it's a range of issues where each person is affected differently for each issue, so some people with ASD will struggle more with eye contact, some less. Some will struggle more with verbal communication, some less.

There are useful images/articles, this is just one example:
ASD spectrum image

Being in a special school won't stop him progressing. Itlll give him that extra help he needs to help him progress.

It's far easier to move from specialist to mainstream education than the other way. That said, it's not easy to get a specialist place.

Depending on how "3" your child is, you will need to start thinking about schools and EHCPs potentially very soon. The EHCP process can be a long and challenging one.

Is your child at nursery? They should be able to advise.

I assume you have started the ehcp process if you’re considering specialist provision? If not I would make that a priority.

visit all settings that would be a reasonable option and see which seems the best fit for him. Be clear what it is you’re looking for.

@LittleBlueBrioTrain
He has an EHCP already, has done for a little while now, luckily, but thank you for the warning as you are entirely correct and that would have been super important advice.

he’s not very 3, due for school entry sep/24 but the process for getting a place in a specialist school is LONG.

Tbh at the moment my plan is ‘get him a place in a specialist setting’ EHCP coordinator thinks we stand a good chance as DS has a very strong paperwork trail and endless reports so he’s very well documented. Then once we have a place I can watch how he develops between now and then, if he doesn’t really need it by jun/24 I know all the mainstreams around here would happily take him (all sounded very enthusiastic- it’s lots of small village schools around us)

@switswoo81

Thank you for sharing! I’ll be honest your DD’s journey so far is basically exactly what I’m hoping for from DS. Did she babble/say words much before talking?

My worry with DS is he’s been coming out with words for ages and babbled constantly but it just never develops of builds it’s like he doesn’t retain the information it’s just done and gone. His SLT felt it could be suggested of a wider learning disability but equally not impossible he’s just been in the ‘pre verbal’ stage longer than most x

Yes she babbled a lot before talking and there were sporadic words here and there she always said mammy and daddy
I look back on old videos now and the babbling was like talking with intonation but no words.
Could your son have delayed echolalia (I cant spell) that he is repeating phrases he has heard.
My daughter is definitely a gestalt language learner she learned chunks of sentences and phrases at the start. For eg at 4 she would play with bubbles and repeat fly away now she will say the sentence the bubbles are flying away up to the sky but will also use fly away about birds etc.
As I said it was a painfully slow process to get her to speak she went to slt (at 95 euro a go!) For 3 months without saying one discernable word. There was no eureka moment it just came in drips.
Has your SLT used the Attention Autism program, this was definitely key with my daughter especially when using a bucket of interesting toys.

She also " lost words" between the ages of 2 and 4. One might develop then disappear. That doesn't happen any more.

My daughter is 5 and in mainstream school and very verbal and in many respects will seem mild to a parent with a non-verbal child (in the kindest possible way). But I'm thinking of moving her to a specialist school, she's moved from a cosy preschool to reception and she's crumbled. Mainstream isn't really set up fit her needs- she's still in nappies, head bangs, is a runner, refuses to be changed. I just feel she would be better now in a school with staff who are more understanding/experience.

This is such a difficult age with asd as you spend lots of time worrying how it is going to be. Try not to think all the time about the future but enjoy this time with him now.
The babbling and words sounds very positive.
My ds is 10. At 3 he had words but could not string them together, was not potty-trained and had no attention-span for joint play. We focused solidly on slt, more than words hanen programme and a type of behavioural therapy which involved engaging him in his own interests. Progress was (and still is at times) very rapid, then it seems to stop for a while then jump.
He is in Yr 5 in mainstream. Imo he has learned loads from his peers. The school has been very good and he has been happy there. He is about 1.5 school years behind. He is unusual, has friends, still stims and lives in an imaginary world but is a general joy and seems happy. I hope secondary school is OK for him.
Good luck

My son is 4.5 autistic non speaking. I dropped any notion of typical milestones when he was diagnosed at 2 and I now parent based on my son's happiness and wellbeing. All I know is no one does their best learning in a stressful environment so I try to minimise this for him.

I have absolutely no idea whether he will never speak, will start speaking tomorrow, whether he will have a job or need full time care. I know for a fact that a mainstream setting would be horrendous for him. He struggles with preschool, he needs quiet, calm and space to regulate. He wouldn't be what someone would describe as high functioning.

He doesn't copy other children and I never force him to interact, being around typical children wouldn't be beneficial for him long term. I've noticed that he is more content with autistic children, they stim in the same way and express happiness in a similar way so it's easier for my son to relate.

To be honest, there's very few people I would consider advice from when it comes to my son, I have some local mums who I respect and think are wonderful, I would listen to them but most people give shit advice and have no idea.

I've noticed that he is more content with autistic children, they stim in the same way and express happiness in a similar way so it's easier for my son to relate.

That's very much my experience. The children in my special school classes were all very different. Some non-verbal, some verbal, some calm, some very anxious and occasionally physical with adults. Yet in their own ways, they formed connections with each other, appreciated each other, and recognised and accepted each other's quirks, sometimes obviously, sometimes subtly.

But what I heard time and time again from their parents (I generally had the children who were new starters, aged between 5 and 7) was that they were so much happier and and actually wanted to come to school. And those parents who picked their children up rather than have them in school transport, said it was bliss to have their teacher come out with a big smile and giving them positive news about their child's day, instead of greeting then with problems or complaints about behaviour.

I would add that when I visited children in their mainstream nurseries or schools prior to them joining our school, more often than not they presented as somewhat sad and isolated figures. In free flow nurseries especially I'd find them wandering in corridors or between rooms, stimming and looking quite lost.

In general, as others have said, there's little to be lost in aiming for a special school place. It's much easier to transition to mainstream than to get a special school place a year or two later (and from a position of failure in school, rather than a position of success).

Also, there is special ed and special ed. DS (now adult) went to MLD school with autism base with little functional language aged 4. He started to use more from about 7. Now fully verbal.

Also, there is special ed and special ed.

Very true. I've taught in both (though now recently in SLD/Complex learning difficulties. MLD with a specialist autism base can be the ideal for some children.

My son is still non verbal and he's 13 ,your son is very young ,he may d develop.speech he might not
regarding education my son has always been in a special school since reception and it's absolutely the best environment for him he thrive,s in it
in a mainstream I think.He would have been "babysat" by a 1:1 at best ,but all kids are different it's about finding me right education sitting for your child .

Hi! My son has ASD and is 4 and a half. I've delayed his reception start for a year. He started saying words (labelling things) just before his third birthday, and this carried on for a whole year .. When he turned 4 he realised that words could get him what he wanted and he now uses language in a functional way which has made a world of difference to both him and me! He uses single words to request what he wants and also says things like "climb higher!", "on swing" etc at the park if he needs help. He sings nursery rhymes and has a ton of echolalia phrases now too. Knows all his colours, shapes, ABC etc and is pirate mad! I feel my son is very clever and I won't be told any different 😊 good luck with your lovely boy. The fact he is saying words at all is very positive imo. X

I have 2DC and the eldest is ND. The age gap between mine is similar to yours and I totally understand the constant look for a sign I have been doing with DC2. So far she seems to be NT.

My first one was on a totally confusing spectrum as in he was so far advanced with words and speech but really struggled with social aspects. Really explosive tantrums, picky eating and sleeping. He still is.

We are fortune that he doesn't have a learning difficulty but the school and everywhere were very unhelpful because of that and we fought very hard to get him diagnosed.

The fact that you care so much about DC shows ultimately he will be fine. He will find his own tribe / strength / life in the end. Hard to say and do but I am taking one day as it comes.

Good luck!

My son is 19 and off to university in September. He was is special school for most of primary, he did go to mainstream.

Personally I think you should find the right school for your child and not worry about whether its called special or mainstream. If its the right school they will enable them to reach their potential, whatever level that may be.

My son also used to copy NT friends, but that sort of copying is very superficial, there was no deeper understanding. An example, if the kids were telling silly jokes, I noticed my son would laugh a few seconds behind everyone else. He understood that a response was required to ‘fit in’ but he didnt understand what, so he just copied. He still doesn’t really understand verbal humour, though he loves slapstick, visual comedy, but he now understands that it doesnt really matter.
There is of course the assumption that NT kids have great behaviours, they are just as likely to copy the poor behaviours.