Toddler with potential autism - how can I help?

[Articul8]

Hi MN,
This is longer than intended - hopefully you'll stay with me:
my recently turned three year old (only child) has tracked with late developmental milestones. Crawled later at 10 months, walked at 18 months. His speech has been quite behind, and until he was 2, he I had put that down to recurrent glue ear which resolved itself - but he had a hearing test and all was fine. His speech is just behind. Right now, he has lots of words, but no sentences.

He's aligning with some autistic traits:

• He never answers his name.
• He can't say his name.
• He parrots sounds that sound like phrases e.g ('lockadeh' for 'look at the')
• He's not using two words like my toy
• Loves his trains and cars
• He often plays alone at nursery - he does like other children, but he has had a lot of negative encounters with peers where he comes across too enthusiastic and the other kid feels overwhelmed and they bite, scratch or hit him. So now i think he avoids peers because of negative consequences.
• Avoids group activities like singing circle
• Really dislikes any singing at all
• We struggle to read him any books
• Throws toys all over when he's fed up
• He has no fear - would walk straight into the sea
• Runs away from us all the time
• Completely obsessed with dummy

but there's others he doesn't align with:

• He's very social and loves company - of others outside nursery
• He has never had any stranger danger instinct. He'll take the hands of stranger grownups in the playground or garden centre to involve them.
• He does make eye contact, but not consistently - only when he wants something or is playing. I don't think its for connection.

I was hoping this was a just speech delay that would correct with some help, but after attending a private paediatric SALT this week, they've said its not a speech and language issue, but more likely a complex of neurodevelopmental issues - and that i should work closely with my health visitor to ensure my son has all the support he needs. And that speech and language therapy wouldn't help. The SALT said it will be a slow burn to understand what was going on, which was deflating. So basically code for: you're on the ASD/ND train.

I'm feeling upset. Like any parent, I don't want him to struggle in life, but I feel I'm mourning the kind of relationship I was expecting to have with my child. Can't describe it very well. Feel like a slightly missing connection.

I've been going around the bend trying to get this mythical 'early intervention' that everyone talks about being key and essential- but HV said he can't be assessed until he's school age apparently. So its just a matter of noting and waiting.

I'm still hoping he'll grow out of it, and it will just be another slower milestone - but I know that's unlikely. I love and adore him infinitely, but at the moment, find him quite difficult and exhausting to parent - he's very physically full-on.

I want to do the best for him. If he is within an autistic/ND range where he finds it difficult to make friends or to just be self-sufficient in society, it will mean big life changes as I'll want to move back near my family where he'll know them and peer cousins. But when will i know?

My questions:

1. Do you reckon it's ASD? Or ND? Or just NT with late developmental milestones?
2. what early intervention can I pursue?
3. any constructive advice.

please don't troll me - its a really hard time.
if Ive said anything here which offends ND people, or parents of ND kids, it's not meant to. I'm just dealing with a lot of uncertainty - and tiredness.

thank you.

I wouldnt presume to diagnose your ds @Articul8 but I do have an autistic son myself. Whatevers going on the (imo) single most important thing you can do for your ds right now is work on his communication. This will be useful whether you one day get a diagnosis of autism (and do start talking to your gp about this - it's not too early), or something else, or nothing at all. No neuro typical child was ever harmed by having their communication skills enhanced.

To that end I suggest you take a look at the Hanen Centre and their "It takes two to talk" programme. I've not used it myself as my ds didn't need it but Ive heard plenty of recommendations for it. They run workshops but there are also workbooks you can buy I believe.

https://www.hanen.org/workshops/it-takes-two-to-talk?gad_source=1&gad_campaignid=22224929174&gbraid=0AAAAAD5_-MIPeKt4_bxGAJIVEqV071PJ7&gclid=EAIaIQobChMI1JnyjJfLkwMV85VQBh3QmQm2EAAYASAAEgIWoPD_BwE

You could also try posting on the Special Needs boards on here. They don't get the volume of traffic as some boards but there's a wealth of experience on there.

I’m no expert. Caveat. But your post has so many different types of information that it’s hard to get a clear picture. Crawling at ten months and walking at eighteen months is, essentially, normal. My very fat (as a baby) and lazy DC2 did this, and he’s the most sociable, thoughtful and bright child you could imagine with no physical /developmental issues. The speech stuff seem normal in some respects — I think all children use global phrases for some things where we hear individual words. ‘Iwandat’ was one of DC1s. Not using two words by age three does seem late, but I wouldn’t say it pointed to autism. Not the trains and cars, or the dummy (though he is too old to have one and you should take it away), or the throwing toys, or the disliking singing. In fact, all of these sound like most 3 year old boys I’ve known.

Not knowing or responding to his name seems much more concerning. It could still be explained by problems with language or hearing, or by a mild developmental delay. I think you need to focus 100% on helping him to develop his ability to communicate and understand speech (including getting professional help where you can) and see where you are in a few months.

It looks like @Hallamule got there first. I was going to recommend the Hanen website too. Knowing how to speak to your child really helps. It may not be instinctive and that's ok.

@Articul8 your DS sounds like mine at that age.. always running away, poor speech (echolia) but good eye contact. He was diagnosed with ASD at 3 but that was before crazy waiting lists, I'm not in UK but it's similar here. In truth it meant nothing anyway as there were no services really, other than parent support groups. Try not to obsess over potential diagnoses and see the child you have now. One regret i had was not getting OT at that age, I didn't know about it but when I got it later it was a game changer. I think pay privately if you can. My ds was a sensory seeker and so many difficult behaviours were managed by meeting his sensory needs first. Look up resources on autism and strategies that help, most of these are applicable to all children so don't be put off my the headings. I work in childcare and many strategies we use are similar, the reason most parents don't look it up is because they don't need to.

For what it's worth my boy is mainstream school, A student and plays sport competitively and is absolutely fine, he has his struggles but overcomes them. Of course everyone's experience is different but you don't know what yours will be yet. Try to be positive for now.

Good advice above. Acouple of potentially other useful things to evaluate. Does your DS pay joint attention? Eg if he spots something exciting or strange does he look to you for your reaction to it? And is he able to copy you? Not just in being shown how to use a toy, but if you stick your tongue out will he do the same?

The Hanen programme is very good. If I recall correctly the theory is that before a child learns to talk they need to be able to engage in a large number of non-verbal reciprocal back and forth interactions and a lot of the focus in speech therapy for autistic children your DS’s age relates to promoting this shared attention. The fact he already has some words is great.

Another useful tip is that with whatever you are working on, take advantage of his interests eg if he loves cars and trains get beside him and play, and also use them as rewards. If he is struggling with joint attention you need to use highly motivating objects.

Try another speech therapist. If it is autism they can help a lot, we had a fab therapist and it made a huge difference. But also dealt with some awful ones.

Sounds like you are taking a very sensible approach. It will work out ok

I have 2 dc, both had very late speech, later than your dc but only one is autistic. It can be a sign but not necessarily.

what you can do is plenty of one-one activities including reading, encouraging drawing and writing, encouraging playing with other children outside of nursery eg informally at the park but most of all talk all the time, in the car, in the shopping trolley, in the highchair - avoid screens for these circumstances, instead interact. Speech delays have increased dramatically in recent years and portable screens are the likely cause, parents today (I don’t know you so I’m talking about general observation) don’t interact as much, they ignore their children out and about parking them on screens, my SALT friend is overwhelmed with referrals and this is the root cause of most she thinks. Please though me assured that if your dc has autism, outcomes are variable but most are very good, my dc is an independent adult now, married!

Like you I worried about DS when he was a baby/toddler with autism. I will say he was diagnosed at 5 years old but it really wasn’t clear until 3.5 and even then we weren’t sure.

From my experience, the lack of interaction as a baby/toddler was the first notable thing. And things like not waving, not pointing, not responding to his name. He also had glue ear and a speech delay, but the speech improved a lot once his hearing cleared up. I suggest like another PP working on communication as he does say some words and will likely pick up the more you model. DS now has fairly average communication for his age.

I would speak to his childcare setting if he has one. While his childminder didn’t think anything was wrong, his preschool picked up issues and were the ones to refer DS. It made the difference between diagnosis at 5 and diagnosis at a much later point. I say this as I know many families weighting for an assessment (most years) in DS’ school.

Ok, so DD1 was similar. You need to go to the GP. Tell them that you've seen a private SALT who has said that your DS seems to have a complex neurodevelopmental issue. Request a referral to a developmental paediatrian. They will do assessments to establish his development levels. For DD1 they used the Schedule of Growing Skills. That will determine if he has difficulties, or global delay. Depending on what they see, they may well decide to do a panel of blood tests to test for common conditions which cause developmental delay such as Fragile X.

When DD1 was seen at just about age 3, she had relatively strong skills in three areas, a delay of 6 months in one area (1/6 delay), a delay of a year in two areas (1/3 delay), and a delay of 18 months in one area (1/2 delay).

The developmental paediatrian can also decide if he needs assessment for ASD/ADHD.

Does he go to preschool? If not, I'd get him in. I had been trying to get DD1 seen and was told I was neurotic. As soon as she started preschool, they swooped in, said 'DD1 seems a bit behind, can we get the area Inclusion Coordinator to visit?' She came out and straight away authorised funding for 1:1 support in preschool at all times. That fed in to her evidence for a Statement of SEN (what today's EHCPs were called) and then she got a special school place. (I'm not suggesting that is what your DS needs, just that it was her timeline).

I would not wait until school to get him seen.

In terms of what you can do:

• Say his name. If he doesn't answer, pair saying his name with a silly sound. So I would say 'Luke....' <no response> 'Luke<brrieee/whistle/make a silly sound>' If he turns to look, say 'hi Luke!'
• Use key words. So instead of "Luke, we need to put your shoes on, let's get them and put them on' use 'Luke, shoes.'
• Have you tried Makaton? You can find videos on YouTube, and if you can find episodes of 'Something Special' there's loads of Makaton there. We used Makaton a lot with DD1 as a child and even now at 20, if we're out she'll sign toilet because she's embarrassed to say it.
• I used sing song speech when I was saying something that DD1 would find hard, and the same phrase for the same situation. So 'not now, later., said in a sing song voice, with the Makaton sign (right palm in the air like a stop sign, left index finger placed against palm and moved around from 12 o'clock position to 3 o'clock position).
• give a countdown for transition rather than just stopping, and try to have a 'next' activity, so it isn't just stopping the fun thing.
• A visual timetable is helpful, so you can point to the activity coming up.

What is he like in terms of sensory stuff? If he likes messy play, then:

• cornflour and water in a tub (oobleck) is really easy to use.
• a tub of rice with small toys in it.
• Water pouring games
• painting the fence with water
• finger painting

If he's sensory seeking, getting a small trampette can give him some movement that is safer than jumping off of sofas, etc.

These threads always fill up with parents with autistic children who recognise ways your child matches theirs, however they don't get the same traction with parents without autistic children who would also recognise things that match their kids.

You appear to be looking at a toddler through the lens of high expectations. A lot of what you mention is completely standard for his age and not even outside the normal range. Are you spending a lot of time around another child that appears ahead or is older (about 10x as many parents say their child walked by 1 as actually do)?

Whatever the underlying reason you'll be working on things that come up, so focus on the issues just now rather than looking for a cause. Do everything you can with language, encourage the things he does enjoy and just have fun together. Worrying over him and analysing him takes away from how much you enjoy him, celebrate his milestones whenever they happen.

Thank you all so much for your kind words and your advice. I really appreciate it, and you taking the time.
I'm sorry for my delay. I'll get back to you in more detail shortly.