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.

(to clarify, we go to a playgroup that is parent-run and where parents attend with kids and there's one teacher. For the UK context I call it playgroup or nursery but it's kind of halfway between the two. DS will go to a standard Montessori nursery school next term)

My little boy was also diagnosed at 2.5 years . He has autism and a moderate learning disability. He's now 5 and the difference in him in those 2 years is unbelievable . He went to an autism specific preschool for 2 years and just started in an autism unit attached to a primary school last September. When first diagnosed his receptive language was very poor and he could understand very little of what was said to him , he only couldn't sit or concentrate on anything for more than 30 seconds and was non verbal . Fast forward to now , he's verbal (never stops talking 😊) , he is fully toilet trained , he has learned how to swim , he can ride a bike , he can dress himself , he will sit and do a 100 piece puzzle , he can read , he loves going to his yoga class , he also loves making LEGO which he is a amazing at . He has also learned to self regulate so he can cope better in busy environments. So what I will say is try not to worry because your little boy can achieve anything he wants , it's not always easy by any means and a lot of hard work goes into it ( I gave up work because I couldn't do both ) but with all the right support he will get there

Thankyou for the support

Do you think there are specific things that the autism specific preschool or autism unit in school are likely to have helped him achieve, that will be really hard to do otherwise?

While we have SALT and OT sessions starting in a few weeks, we are unlikely to get any other support and we have only the choice of mainstream school (as per above, either chaotic and fairly useless, or tiny but requiring huge self-management) as the "special" school here only caters to children with significant learning difficulties, which DS doesn't have. Our local National Autism society really only provides the odd seminar on "what is autism" - no actual help.

I kind of feel I am not enough to prepare DS for the outside world, and I really have nowhere else to turn. DH is willing and caring but has to hold down a job (I am a SAHM for the forseeable) and comes from a family where disability just isn't a thing, so he doesn't really "get it" some of the time.

How long have you suspected that he may have ASD? It’s natural to feel overwhelmed, as many of us were at the beginning of our ASD or SEN journey as parents. The fact that (as you say on another thread) both yourself and your dh likely have ASD may give you comfort as time goes on. Are your parents able to share much about what you were like at the same age?

Regarding the Montessori, it will likely depend on the nursery and the staff working there and your child. Some parents found it great for their ASD child and others have found the lack of structure unsuitable. Hopefully what you will find is more support for both you and him. Have you spoken to them about the pathway that he is on?

ASD children are all different and, yes, he will change massively in the next two years, there’s no predicting how. My ds was diagnosed at 3.11 and was toilet trained just prior to that. We stopped bf at just before 2 but it was fairly painless once we’d made the decision. He has an EHCP which provides him 1:1 support and we chose a small, nurturing school in the next village to send him to. His class has 28 children but he has an area outside the classroom where he can go with his TA when he is overwhelmed. It’s certainly not been plainsailing but overall it’s gone much better than we feared and he’s made great progress, though he’s not as able as pp’s ds above.

Cross post. You are enough to prepare your ds. Read as much as you can about autism and if you cannot find any local support find some online. You mention that you know people with autistic dc, they will be a good source of advice.

Crossed post even!

i've suspected since he was about 6 months old. Fairly clear signs (obsession with fans, regression) from 15 months, then again a regression at 2, which is when we got the referral ball rolling. We won't get a formal diagnosis til closer to 3 but it's pretty clear where we're going with the SALT and OT reports.

I failed to put in the OP about me and DH having ASD (me diagnosed, DH not). I very much hope it all works out as well for DS as it did for us, though I think social pressure is very different now - there is far more emphasis now on self-management, self-regulation, social competence and so on. 35 years ago where we grew up you could be a bit quirky or academic and no-one really minded (well, my mother did, but that's because she also probably has ASD and hated what she somehow recognized in me).
We don't ask family much about what we were like at this age. DH's family are only interested in DH from the point he started being academically precocious, programming computers, winning at regattas and being dux of the school. My family have nothing positive to say about me.

I am wallowing a bit in the bleakness. I am honestly really worried that DS will change to become less competent and the prognosis will worsen and that we won't have any support. At the moment we can't really know whether he will fall further and further behind with each regression.

@letsgooutstiiiiiiide I don't think without the support of the Asd preschool my son could of achieved what he has to date . It was a god send . It was a small class of 6 and the ratio was 4:6 . It was very structured & very intense. Early intervention is so important. Here in Ireland the waiting lists are long so we went private for SLT, OT , I have a ABA therapist that comes once a week and he attends asocial skills group at the weekend . But don't ever think you're not enough, you are but if you can get extra support then do . The future seems bleak at the initial diagnosis but it does get easier x

I haven't spoken to Montessori yet, as we only got the SALT and OT reports this week. Will try to talk to them next week.

How upfront are people with nursery, and with school enrolment, if your aim is to have your child function in mainstream? My assumption would be full disclosure in as much detail as possible, but the playgroup reaction surprised me (i.e. trained teacher who should know about ASD telling me it was just my bad parenting and that I shouldn't go looking for problems and should focus on being a better parent). Thus I wonder what we say to schools at enrolment time...

Teachers are like anyone else, some good and knowledgeable, others less so.

When ds first started nursery at 3 we didn’t have a diagnosis though I had suspected ASD for a while. I told the manager that he was immature for his age (he was) and was given the ‘don’t compare him to others’ line but in his first term they were concerned about his development.

By the time we were visiting schools we were waiting on a paediatrician assessment. We were very up front with the school about the fact that he had special needs that were being investigated. The school were very supportive and repeatedly told us they were unfazed by it. They have been brilliant so far. I just didn’t see the point in pretending otherwise, especially since we would be applying for an EHCP and he would definitely need a high level of support. However I know that other parents worry about their dc’s abilities being prejudged etc. I suppose it depends on your child’s presentation and how much they are affected by their ASD.

Could I just say I so hear you with the fans! Mine went through that spell too. Washing machines were another obsession. He does sound a lot like mine at that age.

We were fortunate that my DCs nursery were supportive and so was his primary school, he wasn't diagnosed till age 7 but all the signs were there from a very early age. He got through primary ok, including coping with holiday clubs and many extra-curricular activities (some didn't work out but most did), but I did have to do a lot of pushing/organising/going private for SALT and OT. He's at special school now and he will be taking GCSEs. He has friends, goes out independently etc although still needs extra support in many situations.

I would say absolutely network as much as you can with other parents of children with ASC, also keep records of every incident, every way that you feel he differs from typical children his age. I am always upfront with care providers about his needs and for the most part the response has been positive. At the least it tends to ensure tolerance for seemingly eccentric behaviour, at best it has meant extra help where needed.

Did any of you have the combination of very far (as in 3+ years) ahead in some academic areas, with quite significant regressions?

I'm not mentioning the academic precocity as a boasting thing but I think it's probably significant somehow. It shows he has significant capacity to learn, which is hopeful. But the regressions also show he has the capacity to lose significant amounts - eg from about 18 months he was reading (word recognition) up to a few hundred words, could enumerate, could tell the time, etc. before the last regression. All that disappeared around age 2 and hasn't really returned. That loss really worries me because if we have 2 regressions a year, at that rate, in a few years he is going to be years behind age peers, as opposed to just a little bit unusual at the moment.

ok. your little boy is 2.5. I feel you are racing ahead worrying about every thing that isn't going to work out, and already identifying dozens of problems. I want to just say, it is going to be alright, you are wonderful mother who will understand a lot of what he is experiencing, sensory overwhelm etc because of your own diagnosis. He will change so much over the next few years, and 2.5 is really just the beginning of his getting to grips with the social landscape.

Ds has a diagnosis of ASD, was an absolutely delightful toddler, loved Montessori, diagnosed at 7/8, some difficulties at school which were ameliorated by pastoral care, social communication awareness, and us getting our act together to make sure he wasn't overwhelmed, and had tasks broken down.

You are the most important intervention. Read as much as you can, about social stories and sensory issues and executive function, priopropioception. Read books like Out of Synch Child has Fun, How to Talk So children Listen (which works for NT and SN children I've found)

Enjoy him and possibly don't expect him to develop at exactly the same rate socially, but enjoy things that you both like doing together - one child round not 3, very short outings, lots of down time. That social time you have together will be a good basis of his later social communication, and you don't have to rush to get him to be friends with lots of other children at this time, more time spent now on skills listening taking turns, empathising will be good basis for future relationships. Lots of physical play is also good, wrestling or dancing or dressing up.

Ds is doing very well, has friends, is doing A levels, heading to uni in a humanities subject we hope, and attended Mainstream school with a specialist ASD base at secondary.

I also worry that you are too technical already in your description of your ds's skills "social referencing" for example, quite an indigestible way at looking at your little boy, if I may humbly venture. You probably mean he greets you, and enjoys your company, remembers things that happen yesterday and certain people do x y z - I worry that you are treating him like a series of autistic traits or NT traits, but he is just a little boy still, sometimes he "gets it" and things go well, sometimes when he is out and it is all a bit much he doesn't. The answer is to focus on ways to make life more enjoyable and less stressful, how to help, not to worry all the time about the things that aren't working and make him worryingly "autistic"...after all 2.5 year olds are notoriously difficult to deal with at the best of times given to tantrums and meltdowns and refusing to share things.

As another poster said, the best support will be your network, and I think, you as parents, understanding and loving your child, with "strategies" rather than breast beating.

I remember once ds having a complete tantrum at a party, aged 7 and I got very upset, it was the end of the world, always feeling he couldn't cope. In fact if I had just used some simple strategies for HIM rather than trying to get him to fit in all the time to some preordained idea of how children of his age SHOULD behave, all would have been well. Ie Bowling Allies are too loud and noisy. Don't say you are bringing a gadget that you then unaccountably mislay. Always say what is happening in great detail and stick to plan, before it happens.Put his I could go on. I learnt a lot. And I wasn't such a good parent, grappling to understand at that point, maybe if I had read more and been more positive a lot of bad situations might have been quite easily avoided.

Thanks Nettleskeins

Just w.r.t. "social referencing" - no what I mean by that is quite specific: it's the glance to someone else's face to gauge their reaction, which forms the basis of a lot of social interaction. It's one of three specific things the SALT and OT noted were unusual in DS. He does it, but far less than a NT child would.

I do spend a lot of time thinking the hours are long but the years are short and that I should enjoy it all more. I find my level of worry goes through the roof when DS seems to spend a few days or weeks in his own world, where he seems exhausted and zoned out and disengaged, because this is increasingly frequent - it is almost the norm now at 30 months, rather than the burningly intelligent 18 month old who had meltdowns because he was taking so much in and couldn't cope. He's slipping so far behind. I am really afraid of how this is going, given that even children with really frank ASD and learning difficulties are expected to just attend mainstream school with no help here.

I will get the books mentioned and try to focus on them (and enjoying DS) as much as possible.

I definitely don't agree with being a drama queen and breast beating. But as I have noone to talk to in real life I am seeking support here and saying what I am worrying about for hours every night.

Is there any pattern to his zoned out periods? Do they follow periods or events where he becomes overwhelmed for instance? It may be worth keeping a diary for some sort of ABC analysis to shed some light. It could be some sort of shutdown behaviour which you can Google to find out more about if needed.

I’m sure your anxiety is worse because of your own ASD but anxiety in and of itself is not productive unless it prompts action of some kind (I say this as a worrier myself). Empower yourself by reading and learning as much as you can to help your ds thrive in his own way. If you feel you are wallowing too much and too long then see your GP.

There is a version of the How to talk books called How to talk so little kids will listen which is the best version to start with at that age.

As PP said, your are your child’s early intervention. Unless they are having hours of SALT/OT per day, most of what helps and supports him will be what happens at home.

We are only about 15 months post diagnosis so my own reading and learning is ongoing but other books I’d recommend are:

• An early start for your child with autism
• How to raise a happy autistic child
• Iris Grace
• Toast
• The reason I jump (and the sequel)
• Oh crap potty training (but don’t get hung up on this yet)
• the Out of sync books
• Ten things every child with autism wishes you knew
• The book you wish your parents had read (not about autism but good)

I have a 5 yr old. He did practically the same thing at the botanic gardens!

I intended to breastfeed until DS self weaned, but he had other ideas. At 3 1/4 I started decreasing his feeds ever so slightly, until over a year later I dropped his last feed. We did have tears buy only for a few days each time a feed went.
Sometimes now I wish I hadn't stopped as it helped immensely when he had sensory overload, not that feeding a 5yr old is socially acceptable enough that I'd want to still be doing it,.for his sake.

We still cosleep as we all get enough sleep that way. We are getting to the point where he might just about be sleeping well enough that I might try cracking sleeping on his own but he still needs help in the night multiple times a week.

Potty training was surprisingly easy for us, so don't automatically assume it won't be. I left potties around and encouraged, with stories etc, but I didn't insist it go in a potty training bent. He started using them around 2 3/4. Three weeks later we got rid of nappies at night as he was sometimes dry despite breastfeeding multiple times in the night. We had potty trips at night for a while but because we were cosleepong I could tell from his wiggling that he needs to go. We are still sorting out bottom wiping, but everything else is secure now, with the slight exception of him not noticing when he needs to go with much warning, but this had also come on massively.

He is in his first year at a mainstream primary. He is thriving. Some things are challenging - noise levels, coping in a crowd/line etc but he is doing great and has made some friends. There are issues, and they do make me sad when I think how they might pan out in the future but it's going okay.

Also you're getting professional help. We have had next to none. He may surprise you!

Thankyou both - and thanks everyone for the help. I'll look up all the books here - have got How to Talk to Little Kids, and ordered Out of Sync CHild Has Fun from the library... and have canned potty training for now (was planning to do it this weekend, but i think i am not in the right frame of mind and neither is DS at the moment).

Focusing on dropping breastfeeds before and after midday sleep at the moment, which is hard as DS isn't a particularly keen eater at the best of times, so he is miserable because he's hungry, but not hungry enough to eat beforehand, and wakes up hangry...

Ds2 stopped breastfeeding at this age, and it worked out much more easily than I thought. We put him to bed at 7pm and he always co-slept from some point in the night, and slept very well despite night waking once (when he came into bed with us)
Potty training I started later with ds2, 2.8 or 3 years. I have to warn you that toilet accidents did continue, but it is a sensory thing, so although he was trained, he just couldn't recognise signals his body was sending him and would hold on much longer than other children when playing etc. My advice is just patience patience patience, and he will get there in the end. Ds did but he was much much older than other children before I didn't always bring a spare pair of trousers and pants with me. Just try not to feel worried, and accept it as a develpmental lag, despite ds's being v "intelligent" in other ways. Same with bed wetting...I just used training pants until he was about 6 or 7. And then allowed for some bed wetting when he stopped wearing them.

I do understand what it is like to feel unsupported, and just want to give you a big hug and say, it is going to be alright, be kind to others and yourself, and you will find support networks will materialise.

We didn't really experience significant regressions, it was more delays and always being on the tail end of normal range for things like potty training (3.5 years but it was reasonably straightforward at that point). It is easy to worry and to get fixated on specific things (I still do and he's a teenager now) but as they get older more positives do emerge, you learn and grow as aa family.

2.5 (and under) is also for some children not a good time to attend nursery, (playgroups with a 1:1 adult around is better) whereas later on they thrive with the additional interaction. I was told this by a SALT btw, it isn't just my opinion.

I never noticed any regressions with ds2, just delays too. Have you had an neurological checkup to rule out any epilepsy - the tuned out/inattentive/in his own world thing although familiar to me didn't seem to be something that got worse, but stayed the same. But maybe I wasn't watching for it, as ds was diagnosed much later on with ASD. I don't know anything about epilepsy (ds2 definitely hasn't got it), although I know sometimes there is a link with autism.

Just wanted to add OP that you sound very worried. This is understandable. But try to relax a little, you are indeed overthinking this . Look at yourself, your DH, your family. They all turned out quite alright. Even if you don't like them, they are fully functioning adults. Your little boy will be OK. Because of you.

Nettleskin made such fantastic posts. I wouldn't repeat. What touched me me most is the comment that the best intervention is you. This is so true.

I think you just need to understand how your child functions, and let him. Don't get in the way as it were with micromanaging him as it could complicate things.

Also this.
rather than trying to get him to fit in all the time to some preordained idea of how children of his age SHOULD behave, all would have been well.

If dropping feeds around naps really isn't going anywhere you could just wait until he drops the naps, although I understand how tying feeding an older child, who won't eat or sleep any other way, can be.

And I totally agree with trying to let him be who he is and not trying to make him be what most of his peers are. It's hard, and I rarely succeed to think like that. I think we are so programmed to think 'a child of x years should be doing y' due to the internet, the early years curriculum etc that if our child isn't we panic. Some things he will take a bit longer to learn, some things he will never be good at but he is likely to excel at other things. More importantly though, he can be happy regardless, and that is what counts.