Feeling overwhelmed. Please give stories of hope re ASD in toddler...

[letsgooutstiiiiiiide]

DS is 2.5 and is on the ASD diagnostic pathway at the moment.

We are about to start sessions with SALT and OT dealing specifically with giving him the skills to navigate social situations, and to get better at self-help skills. He is highly verbal and very far ahead in some ways (abstract concepts, language, music); he communicates and does good social referencing at home with DH and me.

But outside the home, his lack of communication, reciprocity and social referencing, and his inclination to cling to baby habits because he realises he can't navigate things the way other children can, are really impairing his ability to join in and learn at nursery. Also hyperacusis that makes it really hard for him to cope in noisy situations like nursery classrooms on a busy/rainy day.

There are days when I really feel I can't get through to him, too. Today we went to the local botanic gardens. Playground contained several much younger children doing all the communication and motor skills appropriate to their ages. DS did his own thing and struggled with motor skills the other kids took for granted. We then went to the glasshouses (it's nearly winter here) and all he could concentrate on was the fans - which one was going, which one was stopped - until he was almost trapped in a vortex of 10 fans all commanding his attention to the point he couldn't look away. I could see he was stuck so took him out. After that he seemed a bit dazed and got increasingly inclined to wander off in the wrong direction, or sit down and cry, wouldn't walk etc - was totally dazed and quiet through the supermarket and nearly asleep on the bus home.

We have no support. Our playgroup is crap - they "don't go looking for problems", "don't think you should label children", think he's a spoilt brat because he cries a lot (that sort of labelling is clearly OK, then) and that I'm a stupid neurotic useless parent.

DS will go to Montessori next term for 2 afternoons a week- no idea if it will help or be awful.
Family are a no-go area for this kind of thing - my own parents are both on the spectrum, undiagnosed, totally lacking in empathy and cuttingly dismissive of disability; DH's parents are the sort of high achievers who couldn't possibly have any form of disability in the family.

Will mainstream school work? There's likely no support there - the people we have known with autistic kids (all further down the spectrum than DS) have had none. Will he ever learn to stop breastfeeding/co-sleeping? Will potty training ever work? WIll he ever care enough to get dressed by himself? Will he ever join in an extracurricular class like toddler music (other than by sitting 20 metres down the corridor listening intently and then singing all the songs note-perfect when he gets home)?
Will he cope either in a big, loud public classroom of 40 kids running round chaotically (academic education optional, largely dependent on home input), or a tiny private prep with 15 kids sitting at desks being good and academic (and socially competent and probably cliquey)?

Anyone got anything positive to say? I feel like I'm not doing well and am not sure what will help.

OP it must be hard given he was previously presenting as very precocious in several academic areas. That in itself will have steered you towards certain beliefs about how his life might unfold and I can understand your sadness following the regressions and the uncertainty about how much he will regain and when (or if he will lose more) but he is still very young.

My own ds only had a major regression with food. At age two he stopped eating most foods and what we were left with as acceptable was far from ideal. Not as bad as some I have heard of but still worrying for me as his mother and it makes mealtimes and eating out difficult (I give him what he likes to eat and we encourage him to try new foods without pressure but it means that I have to always make two separate meals and he will eat nothing sold in a restaurant or cafe). 3+ years later he has since dropped more foods and gained none. I hope that this will not continue forever but who knows.

I agree with everything said here try not to worry too much. You are on the ball with it all, which means you will be able to guide him through the next few years.

My Ds is going through the diagnosis process now and he is 14. Looking back I think all the characteristics were there with him from a young age but I just didn't realise it could be asd. We have just about managed but obviously things are very hard now as he has been undiagnosed for so long. I wish I had known though, I think it would have really helped my understanding of him.

I think you are in a good position to be a great advocate for your son, I wish I had been able to do that for my Ds. Keep going and also relax too, you are doing well!

I think at 2, a lot of things youre asking about will be impossible to tell. It sounds like youre viewing a lot of things about him as negative autistic traits to be ironed out. Nothing wrong with him enjoying the fans at the gardens for example. I think maybe you might do well to look up about neuro diversity and autism positivity.

I took ds2 to a dietician (It was a referral through the hospital because he had suspected Asthma at 10 months...in the end no asthma though) and talked then about his food pernicketiness. I remember the interesting thing was that they suggested things meringues and quavers to get him used to crispy textures...things I imagined were completely forbidden to all "good mothers" who cared about nutrition. So if you think out of the box with the breastfeeding and naps, you could try giving him warm mil or even dare I suggest ribena (the proper kind with real sugar not sweetener) in a cup with soft spout perhaps, just to get him used to something other than breast when settling. I'm sure someone will say that is terrible, but if it encourages him to sleep and you want to stop breastfeeding. And then you move onto something else before naps, perhaps water and a fromage frais. Any just a suggestion.

Nettleskins my Ds has a really restricted diet even at 14. But he is growing, nearly 6ft, so I have decided to fight other battles at the moment. I do wonder if people would judge us, although Ds hardly ever eats outside of the house. I think the suggestions like ribena are a good idea not terrible at all.

Thanks everyone for the further advice. We've had a couple of Montessori visits and he likes it (and even did some interacting with another kid) and the staff seem competent, kind, experienced and knowledgeable. DS seems to have done one of those developmental leaps that are preceded by weeks of brewing & ASD type behaviours, and is now showing much more imaginative interaction/conversation than before - narrating dinosaurs going to the moon in a coffee pot; pink clouds like watermelon flavoured ice cream, etc. I've ordered the Hanen TalkAbility book and set up some coffee dates with parents further along the ASD journey. First SALT session on Tuesday where we will discuss whether DS needs intensive therapy or not.

Your kind and sensible advice made me get off my backside and do a few things, so thanks all.

Well done, that all sounds like good progress. Hope the SALT goes well.

All positive steps OP

My son has severe autism and GDD started walking at 3 ,still non verbal at nearly 9 but make himself understood . My suggestion to you it’s to accept your son for who he is and not try to make him conform to what’s expected for a neurotypical child ,he’s different and won’t do a lot of thing you wish he would do he won’t be interested in children and prefer playing on his own,he might do “weird” things like licking objects or spin toy cars wheels for hours .. accept him in all his glory and quirkiness . I absolutely love autistic children/people I find them fascinating and adorable even though they can be a bit difficult at times . My son for instance is very stubborn and refuse to sleep early . we try to keep the routine going but HE changes it up . Lol

Stella my ds is interested in other children and enjoys playing with them. His social skills are still developing but he’s getting there. As I’m sure you know, autistic people are all different. for the early starts. We have those on and off too.

DD is gifted and autistic. Doing well academically in school. Finding her place socially in the Sen support room. Is not getting enough support as she is gifted and masks her difficulties but this also means she is doing ok academically despite not doing as well as she could if she had support.

Teaching profession is full of people who know v little about sen.the trading is very poor or non existent. Many teachers are open to learn. Some think they know best and it is parenting. Others will not change and will not adapt anything and are happy breaking the law.

Gifted kids may get bored easily with academic repetition and make silly mistakes with easy stuff, may not see the point of doing stuff they know, may thrive on challenge.

They can also plateau for a while before making a leap in another area.

PS I was a teacher so seen it from both sides.

But have forgotten how to use grammar... Ooops